OK here is my story. Sorry it got so long.
I was diagnosed with papillary thyroid cancer in 1996 at the age of 24. I had a total thyroidectomy in April of and radioactive iodine in May. But my story doesn't really begin there. When I was 18 during treatment for an unrelated issue, that I cant remember now the Dr. felt the goiter on my neck. Instead of sending me for tests or doing blood work the Dr. put me on thyroid medication to take for 90 days. The reason for this was at the time I had no insurance so there was no specialist that would see me.
I took the pills for the 90 days then forgot about it since they didn't make a difference in how I felt or the size of the goiter. I didn't have a regular family Dr. either it was a walk in clinic I had been going to. So nothing else was done about the goiter and I didn't think any more about it until 96 when at my Dr. appt. for my yearly physical he became concerned about it though he hadn't been concerned about it the past 2 yrs I had been seeing him he just ordered blood work each time that came back totally normal.
But at that appt. he decided that I should see a endocrinologist so off I went. He sent me to have a u/s then a thyroid uptake scan (take radioactive pills then lay for a loooong time) I don't remember exactly how long I had to lay there but it felt like a eternity since I wasn't supposed to move at all.
After the results came back he decided to do a biopsy since it wasn't 100% clear if it was cancer or not. The biopsy was not pleasant. It didn't hurt really since he numbed the skin but I could feel the needle moving around in there and it made me come very close to passing out. Just from the sensation
He had to stop until I could get control of my reaction. The biopsy showed that it was indeed papillary cancer. I wasn't really surprised since I had a feeling something was going on. So when the goiter was originally noticed it was cancer then I was walking around with it for 6years and possibly longer since in some of my high school photos you can see what appears to be a knot there and I am pretty sure I remember wondering about it even back then. So had it been a fast growing cancer I probably wouldn't be typing this right now
all because I didn't have insurance.
Within hours you could see that the goiter was getting bigger
From the poking and prodding and messing with the cancer I guess. I got the results shortly after while I was at work. Everyone was upset for me but I guess I had just pretty much shut down my usual way of dealing with traumatic things like that.
I was told that there was a possibility that my voice wouldn't come back after the surgery since they were going to have to scrape the area to get every bit of the thyroid they could and also because of that the little glans that had something to do with calcium uptake might be damaged as well and that was something we would have to worry about after when they could check my blood. Thankfully that wasn't a problem. But my voice was gone I could talk in a hoarse whisper like someone with laryngitis. Talking on the phone was nearly impossible since I just didn't have the volume to be heard.
The surgery was scheduled ASAP which just happened to be a week after we celebrated our 2year anniversary. On the way there I broke down crying in the car terrified of the general anesthesia not really the cancer at that time just the fear of dying when I was put under. A big huge deal to me was my wedding band I had never had it off and was adamant that it not be removed. I would have walked out had they insisted I take it off it was that important. So the nurse taped it on and the surgeon said it was fine. So that part was a relief. After I got back to pre op. where I was alone and I couldn't speak to answer the nurses questions. I had never been in the hospital or been ill before so it was all overwhelming.
The nurse was kind to me and asked if I would like something to help me relax and I agreed. She said that it would basically knock me out. Well it did take the edge off but in now way did it knock me out
I wasn't high or anything but it defiantly didn't do what she expected. My mom and me have high tolerances for narcotic drugs so I was able to get up and go pee just before they took me back which blew the nurse away she just kept saying "I cant believe you are able to walk around like that"
They took me back shortly after that and I went to sleep. When I woke it wasn't like I had been truly asleep it felt different. But I wasn't in pain but I was ticked because they had put that gunk on my eyes and I kept asking the nurse for something to wipe it off with. When she didn't bring it I used the sheet
I woke again as they were wheeling me to the room I was going to stay the night in to see my dh and parents and il's there by me. I just smiled and closed my eyes again. Relieved to still be alive.
When I got to the room they asked me if I was thirsty and of course I was terribly so they gave me the water. Knowing how dry my throat was I knew not to take a huge drink so I just took a tiny sip but still it made me cough because I was not able to work my throat muscles like normal. They were a bit paralyzed still. My mom asked me if I got to much but I shook my head no. After that the second drink went down pretty well when I just let it run down by itself instead of trying to actively swallow.
I still was not in pain but the nurse asked me if I wanted some morphine and I said OK still not out of the anesthesia and was not thinking clearly so she put the shot in my IV. Dh was already laying down half asleep and my mom was in a chair the same way. It was around midnight I think and had been a really long day for them. Well within 15min. I was rudely awaken to severe nausea, had I been in my right mind I would never have agreed to the morphine because any pain shot like that 15 min. after getting one I puke.
So I couldn't talk just a hoarse whisper and I was holding on with all my might to keep the nausea down while trying to get dh or my mom awake. The nurses couldn't have heard me over the intercom didn't have strong enough voice for that. Finally my mom woke and I said "sick" and she grabbed the little kidney bean dish and well you can guess
I was terrified I would pop my neck open though it didn't hurt thank goodness. Mom called the nurse she came in checked my neck then got me a shot of anti nausea and I went to sleep.
When I woke the next morning the only thing hurting was the IV and my back from the lovely hospital bed
: The first thing I asked when the nurse came in to do morning check was can you please get this IV out and when can I go home
The Dr. came in and I asked the same thing and he said the IV could go since I was able to drink and if I could get up and move around he would let me go around noon. He told me that the cancer had spread to 1 lymph gland that was successfully removed and he was pretty sure that he had gotten it all but wouldn't know for sure until the pathology report came back.
I got up and went to the bathroom and my mom helped wash some of the lovely beta dine off me. It was down my back to my waist
: Well I got woozy and told mom I had to lay down right then but the lady was changing my bed and didn't want me to she wanted me to sit. Had I stayed sitting I would have passed out on the floor so I just climbed onto the bed anyway
I was discharged that day at noon.
I healed fast and was back to my sewing job in 2 weeks, tried to talk the surgeon into letting me stay off longer but he wouldn't
During this time was when the OJ Simpson thing was going on and there I was with my throat cut open and you can imagine some of the comments.
Anyway the next month May I had to go in for radioactive iodine treatment. They told me I might be there up to 5 days depending on how long it took the radiation level to drop. I was told no one could visit me in the first 24 hours at all then only for very limited times after that based on levels. I was devastated
All alone hour away from family etc. The room was covered in plastic everything walls, floor, phone, toilet etc. I was in a corner room so that there would be no patients near me. The room next door was empty on the cancer floor of the hospital.
They came in pushing a cart with a lead square container on it and wearing radiation "buttons" (to tell them if they were being exposed) and they opened the box inside was another lead container this one round. Inside that one were 6-8 capsules I had to be the one to touch them they wouldn't/couldn't because of the high levels of radiation. So I took those and asked if they ever made anyone sick and they said no but if they do come up we would have to start all over
: thank goodness no issues.
They told me the more I drank and caused my salivary glans to work the faster the radiation would pass since it comes out through urine and spit. So I started drinking
and they had some lemon drop candy (cant even type that or say the words lemon drop without getting nauseas now) I sucked the candy and drank pop by the gallon and peed like a race horse
I spent the majority of the night awake reading Clan of the Cave Bear by Jean M. Auel & watching a little TV. I slept maybe 4 hours then started reading again. I started the 3rd book in the series The Mammoth Hunters.
I only saw 1 person when they brought in my food tray that evening then the next morning someone brought me breakfast but neither spoke to me and left ASAP
I was up taking a walk on my plastic covered floor the next morning when I heard a beeping outside my door. I knew it was the guiger counter thing since he got a baseline scan of me right after I took the pills the day before. He knocked and came in and asked me if I had been up walking, since I jumped in the bed when he knocked
and I said yeah and he said he could tell cause the number was going up and down as I walked. He scanned me and he was surprised to see that my levels were in the "safe" range and I would be able to go home that evening. First time he said that anyone had dropped low enough that fast
I am special
So I got my discharge papers and my thyroid medication script and left when dh got off work and could come get me. When he was discharging me he made sure to tell me to stay away from pg woman and babies for at least 2 weeks
I started the meds and within a week my voice was returning
My dad had been particularly worried about that and I called and spoke to him so he could hear that I was nearly back to normal. He was thrilled. To this day if I my levels get to low my voice shows it.
I had to go once a year for uptake scans (take the small dose radiation then lay forever) up until 99 when I had my last scan. I was ttc had been for 2yrs and had to put that on hold for 3 months
but the good news was the first month after I got pg with dd
My levels fluctuated a lot when I was pg with her. I went in every 3 months for bw and every time they had to up my levels. It stayed high after her birth and did the same thing with ds. Only in the last year has it started to need to be lowered.
I had zero issues with bfing had a oversupply if anything
and neither kid had been affected in any way.
So that is my story
way to long I know
I don't mind questions and would be happy to answer any that anyone might have. Thanks for reading