So yesterday didnt go as planned... I was so concerned about allergic reaction that even on the way to the Magee hospital I was calling Uniontown Hospital to find out if they had any records of what was administered to me that I had been allergic to there. I was assured by everyone that I would be just fine. As I went in to have my bone scan injection the kind man came out and spoke with me and immediately started questioning me about my allergies, I almost had to laugh as I said to him Ive been calling and asking everyone that I could for a full week now from my oncologist to the oncologist nurse to the nuclear medicine techs to the nurses that work in the scheduling department to other hospitals. Ive been assured by everyone that I will be fine. He assured me that the medication I was getting for the bone scan was nothing to worry about though Ive heard that 1 million times before. But when I called Uniontown Hospital in that morning the tech there was kind enough to look up and be able to tell me exactly what formulation I had at Uniontown Hospital that I was not allergic to and it was the exact same that I was to receive that day for the bone scan. So That had put my mind at ease . But he was however concerned about the CT scan that I was due to have later in the day. So I allowed him to administer the radioactive isotope in my arm where as we were then to leave for three hours and come back when It had enough time to get into my bones to have the scan.He told me at the time I was scheduled for the contrasted ct he would make sure that he was downstairs on the zero level to administer whatever I needed and because he wanted to speak with them and make sure that I was going to be okay. We had many hours between procedures so we went down to the cafeteria I got something to eat and went out and sat on a bench to wait until it was time for my next procedure ...as we were sitting at the bottom of the steps of all of the floors in the hospital here he came down the steps directly in front of our bench as I was speaking about him to my mom dad and Steve ,he stopped and told me that he was going to go at that exact moment and speak to them downstairs because he was concerned about my allergies. When the time came for us to go to the zero level floor for my CT scan of my chest abdomen and pelvis we got there quite early I was there in the hopes that they would allow allow me to premedicate and I could get things over with faster as I was already exhausted... My ribs and under them terribly painful and this was the first day in four that I had even been out of bed. Sitting is the worst for me as it makes my ribs push down on whatevers underneath there that is hurting me so badly. Not to mention that dad had gone that morning only moments before and had Cortizone shots in his knee. We passed him as we were heading to Magee and turned around and picked him up he wouldnt stay home nor would my mom though I knew it would be a very long day for them ,so he limped through the day in pain. But due to the fact I needed the premedication they would not allow earlier testing so we had quite a while to sit ... I spoke with the lady at the front window and told her again of my concern about allergies and told her that Id spoken to the man in the bone scan room and his name was James Herron and that he was also concerned due to the fact that I have had multiple allergies to contrast and had gotten Hives with the identical contrast I was about to receive. She said in a very smart voice what does he have to do with anything ??as I looked through the window I saw A head pop up and it was his he was in fact there waiting for me as he had promised. Like an angel. I saw the two of them have an animated conversation but I couldnt hear what they were saying a few seconds later he poked his head out and asked if he could speak with me and took me into a side room ,the problem was last time I was there that I had the allergic reaction no one deemed it necessary to put it on my charts that I had gotten hives. And all of my other testing had been at another hospital so they had no evidence of me having a reaction there either so they thought that it was more important for me to have the scan than to listen to me when I tried to tell them that they were probably going to kill me. His hands were tied as to what to do but he tried one last ditch effort and went back and spoke to the radiologist himself and told him of the concerns that I had explained to him the testing that Ive had and the extreme allergic reactions Ive had. He came back out and told me that he did not feel the radiologist would give me the contrast but to take the premedication just in case. So I took the medication that was supposed to stop the reaction and I went and sat when they called my name to go back for the tests at first you have to drink two large nasty. Glasses of red sickeningly sweet medication. I drank those and ask the lady at the window if I was actually in fact going to have to have the dye she said yes so they were going back-and-forth trying to decide whether to do this to me or not which was making me extremely anxious finally I decided to just hand it to God and drank the noxious fluid. They take you back to the small room with the couple other ladies there in gowns and it was very quiet in there. I completely understand that as I have sat in that room many times on my own waiting for my fate it was the last place in the world that I wanted to be too . Er patients were being pushed ahead of us making us wait longer...but shortly I struck up a conversation with a girl named Monica and of all the people in the world for me to speak to as the room had emptied out and it was only the two of us and she was from Romania she spoke English pretty well but slightly broken it was a little hard to understand. She was concerned about being late for work.Upon talking I couldnt believe my ears she was not even 40 years old she had cancer since she was 36 she had gone to her gynecologist and told him that she had found a small lump and the doctor said oh your young dont worry about it its inflammation sound familiar?? He did no testing other than mammo. She had blood work sometime later where they found high tumor markers. She went in for a scan and had Cancer all inside of her liver. When they went in and did a tumor resection after failed chemo and took out a portion of her liver they found out that it was breast-cancer all along guess what type? Lobular exactly the same as mine!!she was never tested because she was under 40 and had no family history. My heart broke for her as her story was so parallel to mine she has an eight-year-old little girl the only difference was that she was not sick for treatment and shed went on with daily life she didnt even lose her hair through chemo . She exercise daily for an hour ate everything she was supposed to do and before Christmas her tumor markers were at 600. She decided to go and see her mom in romania.She said she ate drank and was Merry there! She was back in the CT scan room trying to see how far the cancer had spread at this point. She doesnt discuss her illness with her little girl and told me that if she found out that things were worse she was going off on her own and having no more treatment so no one would have to see her suffer. That she was glad that her mom was in Romania and she wanted no one to worry about her as the disease was miserable enough and she didnt want to place that burden on anyone else. I asked her what shesays to her little girl ?I dont often have opportunities to speak to someone about things like this that are my age with children who have the same identical condition as me. But we differ on the way that we think she told me that it has been three years and four months since she was diagnosed her original diagnosis was stage for breast cancer with metastasis to her liver though they never found it in her breast until they discovered it in her liver. She was giving a liver dissection and a full mastectomy. She had trouble to John Hopkins and many other medical facilities to find out if there was anything else that they could do they all told her that she was getting exactly the treatment that they wouldve given her only McGee had been even more advanced in attempting the liver resection they would not have done so .She has lived three years and four months since that original diagnosis she says she has no pain. I had decided before meeting her that if something had shown up in the scams that I would most likely not seek out any more chemo as I would rather spend the time with my kids holding them and loving them then being locked away in this room. Too sick to live too sick to love just trying desperately to hold on. This little taste of life Ive had since my symptoms have let up some has been having to me and it is been worth everything that I went through but if I was stage 4 Im not so certain that I would feel the same way. What Monica said to me yesterday really got me thinking. But she lives pain free and not ill I barely exist on chemo due to my bodies dislike of chemicals . I excusedmyself to the restroom as her story upset me and I didnt want to cry in front of her ,when I got in front of the restroom mirror I noticed that I had huge red raised hives all over my neck and down my chest ..WHAT??I thought? I havent even had the IV contrast yet? So I left the room and I went out and I found the nurse who looked on in horror soon I was surrounded by three other nurses. They were trying to convince me that the chances of me being allergic to the drink that I had was slim and none. But as they called the head radiologist to check everything out she confirmed it was in fact an allergic reaction.I am not only allergic to the contrast dye itself I am allergic to the drink they give me prior to the contrast! She told them to watch me and to see if the work rash got worse but to go ahead and continue with the CT without the IV contrast because it was so important for me to have this test. Soon The lady from Romania that I had met came out of her skin and saw what was going on with me and my rash she asked me for my name and phone number and told me she would like to speak with me and meet with me in two days time. There she was the sickest she was wearing about someone like me. That is the nature of the type of people that I have meant to this journey. So they put me in the machine and I did the CT scan when I got out the rash is still there Soon I was very nauseated dizzy lightheaded flushed covered in hives not feeling well at all I was not allowed to be out of anyone sight but it was the end of the day and the nurses have all gone home there was only one lady there who was an iv lady and the radiologist who was working on someone else so they had to call a code on the computer and soon the head radiologist a doctor and two other nurses were surrounding me they got Steve my mom and dad back into the room and took us all up into the emergency room. Administered medication to stop my reaction. And I was observed there we got to the hospital at 10 AM and we left at 10 PM. In the meantime I told them that I had developed a migraine the stress not eating and all of the things that I had it ministered to me that I was allergic to it gotten to me. The doctor had the nerve to say to me if he doesnt believe in giving opiates to people with headaches even though the lot it is on my chart my pain doctor is there at McGee and he couldve at any time looked it up or called her. My dosage is 2 mg allotted one or one and a half pills every four hours I havent needed to take this medication and some time as I have back down so much from all of my pain meds but this was not that time my head was pounding I was hanging over a bucket I had to run to stay I was terrified mortified and was going to an allergic reaction. Finally a nurse appeared with a syringe with the lauded and another syringe of Zofran just as I was about to be sick. She gave them to me and for a split second I felt better but something just still wasnt right so I waited as long as I could and then I paged and I asked if I could have some more because I just couldnt stand the pain in my eyes I had a rag over my head and had the lights off and still it was excruciating only to find that the doctor deems necessary to only give me 1 mg of the lauded when he came back in the room he asked me what I take and I told him and he said thats prescribed for body pains not for headaches I wasnt thinking clearly or I wouldve given him a piece of my mind because it is actually some prescribed for me to take every four hours around-the-clock as needed. So he had no reason to question my motives. It just has never happened to me again I was shocked but there was someone who had to be holier than thou and either wizard behind the curtain that deemed it necessary as to whether you would get relief or not. So he says in his superior voice I will give you your dilaudid. when I asked the nurse how much was in the next vial 1 mg !!which was exactly less than half of what my normal doses that I couldve had at home and I had waited another hour to get the medication. So we all sat in pain and misery when it could have ALL been avoided! I am home and I slept today until 230 this afternoon I tossed and turned and rolled and was in pain all night finally I was able to fall into sound sleep sometime after the girls got on the bus this morning . I was told to NEVER have another dose if ANY contrast EVER again by the head radiologist in front of all the others in the room. Jim my angel from earlier had in the midst if it all had disappeared and Im not even sure that he knew I had the reaction. I intend to call and tell his superiors how he had gone to bat for me. I was told I would have results today but NOONE called, and Im not going to push it as they have to look extra hard now because without the contrast they cant see things clearly which will make my diagnostic testing from now on even more difficult. Thank you for your prayers everyone Im certain that they are part of the reason why made it home which I nearly did not do. If I had not went to the restroom in that moment and saw the hives myself they wouldve administer the IV contrast and it wouldve probably been too much for them to have reversed the effects of. I love you all and I will talk to you soon ...I hope to have the results that I am waiting on and have them be positive ones
Posted on: Thu, 15 Jan 2015 22:40:18 +0000
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