April 14th, 2019
I am feeling very under the weather today. I feel like I have the flu. My stomach is very upset and my body aches. There was a knock at the door. It was my boyfriend Mikey. He was dripping with rain. He knew I wasn't feeling well. He said he could feel it and so he came right over. He stripped off his wet clothes down to his boxer shorts and tee shirt and laid down beside me in my bed. I was freezing cold so he held my hands in his and rested his forehead on mine. After I felt a little better he made me a hot tea and we watched funny videos on our phones as we sat up in my bed. Then he left but not until he knew I was okay. I love him so much. I slept like a baby.
April 15th, 2019
I had an appointment with my family physician. It was regarding a concern about my throat. It has been bothering me since October of 2018. It has been feeling like something is stuck in the base towards the right side. At least 6 times a day it becomes so itchy that I have to cough and tears would stream down my face. The spells would last upwards of 25 minutes. I have been worried about new tumour growth. I also know that the medication I am taking for the cancer can cause goiters. The medication is an injection that I get every 28 days called Sandostatin LAR. The LAR stand for Long Lasting Release. The doctor has ordered blood test and an X_ray of my throat but thinks there may be a possibility that the problem might be a side effect of my blood pressure medication called Ramipril used to lower blood pressure. I have been taken off of it and it has been replaced with a different one.
April 19th, 2019
I'm feeling pretty good today. I'm a little tired but only because I had an interrupted sleep. My boyfriend, Mikey slept over last night. He's a "wake up, sit on the edge of the bed, turn on the TV, go outside for a walk, sleep and repeat", kind of sleeper. I wouldn't have it any other way. I feel safe and taken care of when he's around.
April 22nd, 2019
April 24th, 2019
April 26th, 2019
I'm doing well today. Mikey (my boyfriend) and I went to my brother's and sister-in-law's house yesterday for Easter. My mom, stepdad, sister and all of our kids were there. We took separate vehicles. We had a nice meal, drank some wine and sang karaoke. That was a blast. We had lots of laughs like family should. This is what life's all about.
Today is Mikey's birthday, Tomorrow is the anniversary of my father's passing and the next day is my brother's birthday and also the day I had my primary surgery 3 years ago. It seems so much happens in April.
I had an experience last night. I was sitting with the kids in my arm chair in the living room listening to music when I started feeling a stitch in my upper right side under my breast. I was liver pain. This is something I have felt before but this time it became so intense that I had to leave the room. I could hardly walk. I went into my bedroom and shut the door. I tried to take a breath but the pain was so strong that I collapsed onto my bed. I tried my hardest not to make too much noise because I found myself moaning from the pain. I knew the music was on so I'm sure the kids didn't hear me. I managed to get a deep breath and was able to stand up. Then the pain went away. I silently cheered and returned to the living room.
Even though I know I'm going to experience this type of pain through in the future, It scared me. I need to be ready for it but I guess I wasn't expecting it. I know this is going to be a part of my life and I need to be strong so I can fight it. I told Mikey about it. He gave me hell for not calling him. I have no idea why I hide my pain from people like I do.
Today marks the day 3 years ago that I had my primary surgery. I posted on Facebook that time flies but it actually feels like a lifetime ago. I have completely changed as a person and have a whole different outlook on life than I did before. It frees you when you no longer fear death. There are 2 things worse...regret and not living life to the fullest. These 2 things are something I take seriously. I think I have them covered so I'm in a good place regardless what happens.
About my health? Well I decided to go on a cleaning jag yesterday after 4 days of writing and my body is punishing me now. Last night my left shoulder decided to seize up. I took some Phoenix tears for the pain but I decided to take a little extra....Lol. This was at 2am which was probably not a wonderful idea. I was wired until around 5am and then crashed. I mean "crashed" isn't even a good enough word for what I did. I woke up at 3pm in the afternoon. I remember getting up earlier for a pee and the room was spinning. I guess I made it back to bed. I can't quite remember.
My mom usually has dinner with everybody over on Fridays but I told her I can't make it today. I can hardly move.
May 15th, 2019
I went to the doctor two days ago and had an appointment for my son Daniel and myself. I set them up together. My blood work was taken last week and what I was told is that my vitamins are good but my blood sugar is high which is a side effect of the Sandostatin injection I am on. We have to keep an eye on that. I was told I was due for a mammogram and a PAP test. I refused both. I told Mizna (the assistant) that there is no point in my opinion because nothing can be done anyway. I have decided a long time ago that I will NOT be getting surgery for the cancer. I have so many tumours in my body that there is no way to get rid of it anyway and the risk of dying during surgery for me is so high because of the carcinoid syndrome. The idea is silly. They would have to cut half of me away to get it all. No thanks. I'm going to deal with this as it comes. Maybe if I have to have life saving open heart surgery later I may consider it seeing that this causes carcinoid heart disease which damages the valves in the heart. That's different because it's not cutting out cancer that is through my body anyway. My blood pressure medication was doubled because my blood pressure is high even though I am on medication for it. It seems that the problem in my throat has calmed down since I went off the Ramipril. I guess that's what was causing it. Thank goodness it wasn't cancer in my throat. I was joking saying that maybe they will have to take out my voice box and I would no longer annoy people with my loud voice but sometimes I mean things as a joke in an attempt to lighten it up but aren't received well. That would be my fault. My family understandably doesn't appreciate that kind of humour.
I took Daniel for his blood work that was ordered to rule out problems as to why he is so pale and tired all the time. Then we went to get a bite to eat and shopped for a few things for dinner. I had an episode in Fortinos while we were there. I was dripping sweat and became dizzy. My flushing was bad the whole day and I was feeling "off" at the doctor's office. ( I threw up in the morning but never thought that much of it). When we came home I rested. I have been very wiped out since...two days later. I'm feeling better today but not great. I rarely do but I'm staying very positive as always.
May 16th, 2019
One of the strange things I have been experiencing every night for quite some time has been uncomfortable sensations in my toes. By uncomfortable I mean tingling, zapping (like electric shocks), a feeling of burning on the skin of my toes. The feeling is so incredible that it keeps me up at night to the point of where I will literally not sleep for an entire night. Last night I decided to research it. I Googled this relating to people with carcinoid cancer. Something called Neuropathy Peripherie came up. I found out that it is a side effect of Sandostatin LAR in some patients who are on high doses and one's that have been on the drug for a long time. I have been on it for just over three years so I think I qualify. I was very relieved to learn this. One of the things that I have discovered by belonging to support groups for this rare disease is that we are obligated to become our own doctors. There is a lot to learn about this disease that the doctors admit to not knowing as much as they would like to and so much of their education is learned off of the patients. My doctor didn't even know about carcinoid cancer causing pellagra.