lmtsrn shared an experience
Radiation (External radiation ): OK it's 5 weeks past surgery. I'm in for my check up with the surgeon. He tells me it's now time to move to the radiation treatment. His nurse makes an appointment with a center not far from where I live. I show up at the appointed time and they put me in the examination room. The nurse comes in and we start the paperwork. WOW! Look at all these side effects this may cause. Why would I do this? It seems crazy. OK what's my alternatives? Not do the treatment and since I was stage III and we know it wasn't all removed the cancer most likely comes back. Well that's not much of an option. OK where do I sign.
The doctor comes in and explains the procedure and what all I need to do/not do. First she tells me I have to eat. Remember I'm only 140 pounds. Also, get some of those old folks mild shake things. Drink 2 a day. Also, no orange juice or other anti-oxidant type of foods. The radiation "oxidizes" the cancer. We don't want to do anything that would not allow it to do the best job it can. Also, she explains that I'm going to get a very sore throat. That's because of where the tumor is my esgophaus is going to get radiated. Somewhere along the line I'm not going to be able to eat. Hence, the reason I need to "plump up". I'm scheduled for 7 weeks, 5 days a week. Come back Monday and we begin.
Day 1 They call me back. I lay on the machine that looks like something out of a sci-fi movie. They already marked me up with a magic marker with a bullseye drawn on my chest. You get to keep this lovely body art throughout the process. If it starts to fade they freshen it up. Ok it took 20 seconds. That's it. I didn't feel anything. Yep that was it come back the next day.
And so I did. After about 3 weeks one day I woke up and my throat hurt just a little. Oh no! Here we do. She had already given me some medicine to take but it didn't hurt that much so I'll wait. Now here's another one of those funny moments. As the morning wore on my throat hurt more. I had been able to go back to work and was working about 6 hours a day. I sure wish I had brought that medicine with me. A co-worker and I went to lunch and why I don't know we went to a mexican resturant. We ordered chips and dip. Was I a dip or what? My throat is hurting why am I eating chips. Well we ate them and the salsa was pretty spicey. We finished our main dish and it occured to me that my throat no longer hurt. When I got to the doctor to have my raidaiton that afternoon I explained what happened to the doctor. While it may sound backwards peppers are used in the production of some pain medicines. Why it seemed to have helped me who knows. But from there on out I ate salsa everyday and never got another sore throat. Bonus was the salsa sure tasted better than the medicine she had given me.
Ok so remember the doctor said I'd lose weight. Well I didn't. I gained 10 pounds during my radiation treatments. Since I didn't have a sore throat I ate almost all the time. It's the natural reaction of the body to regenerate itself after being radiated and the cells being killed. However, I did develope radiation numininus (sp?). Basically, my lung on the side they radiated got "fried". Good thing I have another one. Probably won't be running long distance races the rest of my life.
lmtsrn shared an experience
Procedure or Surgery (Surgery): Surgery day. December 15, 2005. It's 4:00 in the morning. It's coming a freezing rain. This is Atlanta! It's not suppose to do this here this early. Well off we go to the hospital. I'm actually feeling calm. During the pre-op testing my regular doctor had given me some Zoloft to calm me down. If your's doesn't offer something, ASK! This is a long journey. You'll need be calm and collected in your thougts. Unlike I was when I was first diagnosed.
We arrive in the waiting room. They take me back and start all the pre-op stuff. Put on the gown. A team of folks begin to introduce themselves as they get me ready. Somewhere along they way they gave me a sedative that made me relax. I still don't know which one or when. When they finished with me my family was able to come back to see. Interesting what your thoughts are when you're headed under the knife. Is this the last time I'll see them? What do I say? I think I just say see you a little later after my nap. No need to upset anyone at this point.
"Hello, can you hear me. You need to wake up" I open my eyes. The nurse is standing at the foot of my bed. I'm alive! But what are all these tubes and wires running everywhere? I have an I.V. in each arm, a hose in my nose, three drainage hoses coming out of my abdome, a spinal block and a catether. But I'm alive!
She introduced herself to me and asked how I felt. Acutally, not too bad considering. But then good drugs probably had something to do with that. She adjusted everything and said she would be with me for the next 12 hours while I was in ICU. Acutally, it was post-op because all the ICU beds were full but it had all the equipment an ICU room usually has. She came and went every 15 minutes checking on me. Again, another person in the journey that I will never forget their kindness. My family was allowed to come back and see me. Honestly, I was getting tired so after a while I suggested they all go home. It took some convincing but I told them I was going to be just fine so they left. Wow I need a nap.
I slept off and on as the nurse would come check my vitals and adjust things. There were a lot of funny moments along the way through cancer world. The first happened about 4:00 a.m. the next morning. The nurse came into the room and said, "your not going to believe this but you have got to have a bath before you can leave ICU." We both laughed. With all the gear hooked to me how would that be possible. We agreed she would wipe my legs and arms down and try to get off as much of the yellow stuff they swab all over you before surgery.
It's 7:00 and I wake up from one of my naps to the voices of the nurses outside my door. Remember the ice storm from the previous morning? Well it's happened again! The nurses can't get to work to relieve the ones that are stuck there. To make matters worse they just called for a fire drill and the operating room is full of new patients. You may recall I'm in post-op not ICU because there was no room the previous day. To say the least the folks out in the hall are not happy but they pushed on. Task one, get the folks in post-op out and up to a room.
In comes this orderly with what I would descripe as a recliner on wheels. The nurse comes in and says "you need to get in that chair". I look at her like she is crazy. How am I suppose to get our of the bed with all this hardware and get into that chair. I now understand that they wanted me up as soon as possilbe and moving around. With a little more encouragement, ok an order, and a little help I was able to get into the chair and off I went upstairs.
When my family had come in the previous night they had told me the doctor was not able to get all the tumor but couldn't give me any details. This had been a downer at the time but I wanted to talk to the doctor myself. Finally, he came in. He proceeded to tell me that the tumor was the biggest one he had seen in 30+ years of removing thymomas. It was the size of a cantelope. I'm only 5'6" and 140 pounds. It was all down the left side of the chest cavity. Yes it was true. He didn't get it all. A portion of the tumor was attached to my aorta. He scraped it off as much as possible but he didn't want to actually cut it out. He explained that if he had done so the section of the aorta that he cut would be weakened and since he expected me around for a long time to come he would prefer to treat it with radiation and not create a problem sometime down the road. Then he was gone.
Now I'm confused. Didn't get it all? Be around for a long time? What did that mean? My mind goes into overdrive. The head nurse came in. I had gotten pretty friendly with him so I asked him what he thought the doctor meant? He begain to explain the code. Dr. Miller is a straight up kind of guy. If he said I was going to be around for a long time he meant it. If he thought otherwise he said he had heard the doctor more than once tell someone they needed to get their affairs in order. OK I think that's good.
The next few days were spent trying to get up and walk as much as possible. The more you move the better off you're going to be and the faster the recovery is going to be. (at least that's what they told me, I now know they are right) Also, Emory is a teaching hospital so since I had a rare cancer a number of medical teachers and their students came by to see me. At first I didn't like it but then I thought these students might one day come across a thymoma so I relaxed and tried to be a good subject. If nothing else they broke boredom of laying around. Also the nurses and various others will come in every hour it seems to give you something, check vitals, take an x-ray and other fun stuff. You're not going to get any rest.
OK so when do I get out of here?? Well count backwards. The day after you have the final drain tubes removed and spinal block removed. That will be the day after they take the first tube out which will probably be about day 5. So get as comfortable as possible and relax between walking the floor. Oh did I mention you are going to loose your modesty? Remember that gown they gave me in pre-op. With all the gear I had it was difficult to close the back. After a while when I went on my walks around the floor I gave up. It's a hospital. Everyone there has a behind and everybody's seen one. They're really not all that special.
Ok so let's get the tubes out. Take a deep breath and hold on. It's kind of basic. The nurse grabs it and pulls. The first one wasn't so bad. Ok it hurt for about 2 minutes. But push the button on that little pain medicine machine attached to the spinal block and POOF, it's gone. Next day, same procedure except we're going to do the other two at the same time. Wait let me hit this button a couple of times first. OK here we go. It's over! Later she came in and removed the spinal block. This is when it starts to get painful if you don't take your pain medicine. Unfortunately, they don't let you take that little black box with you that held that wonderful potion that kept the pain away. Don't try to be a hero. If you're hurting the pain will slow the healing process. Take your medicine.
But I pretty sure I'm going home the next day.
Well the check out process at the hospital seems to go in slow motion but after what seems like hours (it was only 2) I'm on my way home. We arrive and I slowly go in the house. I try to lay down but can't lay flat. Where's my hospital bed that sat up? It seems that because of the way they pryed me open my back ribs hurt whenever pressure is applied. The solution is a recliner that my neighbor lends to me to recover. I'd suggest you get a comfortable overstuffed one like they gave me. You most likely will be in it for a few weeks until you can actually lay down on those ribs. But I'm home and alive!
lmtsrn shared an experience
Oh No (Diagnosed): How could this be happening??? I was one of those that rarely even got a cold. It was discovered by accedent after a routine chest x-ray. The doctor came into the room pointing to a shadow on the x-ray and saying "what is this?" I went immediately from the examine room to have a CT scan performed. I was told to go see the doctor the next morning and he would go over the scan. I knew it wasn't going to be good.
The next day I sat down with the doctor and he explained it was probably some type of cancer. He didn't think it was lung cancer but most likely was lymphoma. They schduled the biopsy for the following week. I couldn't sleep. All I could do was cry. I was a basket case to say the least for the entire week.
They did the biopsy. About three days later he called and said he was leaning to this thing called thymoma but they had to do some more testing of the sample. A couple of days later he called back and said he had made me an appointment with the surgeon at our local hospital for the next day. When I went in the surgeon looked at the scan and immediately said he would not do the surgery. That this thymoma thing was very rare and he had never actually seen one. He was referring me to Emory Hospital here in Atlanta to a Dr. Joe Miller.
So the next week I go in to see Dr. Miller. I had done a good deal of research on the cancer and on Dr. Miller. I knew it was very rare. I also knew that Dr. Miller was very experienced in treating thymoma. He confirmed I had a stage III thymoma. He wanted to make sure it had not spread so he scheduled a PET scan.
The day of the PET finally arrived. The folks at Winship Cancer Center at Emory were too good to describe. I'm not sure how they can be so caring for people they don't even know. But the scan went as planned. While the technicians aren't suppose to say anything I was able to beg the remark, "I don't see anything Dr. Miller can't handle here" from him. The receptionist even gave me a hug when I was leaving. Wow what a great group of people Because all this is going on during the Thanksgiving holidays it took a couple of weeks to get a final answer from the PET. No the cancer had not spread and so surgery was scheduled.