I'm so angry. Angrier than I've been in a long time. Angry and sad. Normally, I think I deal with things pretty well. I make jokes, I laugh, I poke sarcastic fun at my situation. But I'm tired of laughing about it, and I'm really just tired of the whole thing.
Why am I angry? I'm angry at what my life has become. I was an athlete. A flirt. Strong. Lazily wandering through life thinking I had so much more of it to go. I want that life back. I want a life where I'm not in pain all the time, or being sick. I want to be able to exercise, do MMA, win belts and fights. I want a life where I'm not on medications that I have to worry what they'll do to me or that I have to keep myself from being addicted to. I want my clothes to fit, to not be asked if I'm pregnant or when I'm due from swelling. I'm angry at all the physical changes, that they're pointed out when I already see them, that I feel completely unattractive and undesirable and then have to take a pill that cause weight gain, acne, hair loss, and depression. I want the life I had back, where I felt beautiful and didn't have a self conscious bone in me.
I want friends who didn't abandon me because they weren't able to cope. I had to go through all of this and learn to cope with living with it. The least you could have done was be there. I'm angry that I know what it feels like to go to a movie and not be able to have popcorn because I have to have a colonoscopy. I'm angry that I've been poked and prodded and cut open. I'm angry that I'm 23 years old and I got cancer. I'm angry that I have no control and that I'm afraid all of the time. I'm so so angry that I've been as good a person as I could have been and this is happening to me. That I know some amazing people who have to suffer through cancer and illness. I'm angry that bad things happen to good people.
I want to not have to worry about my job and losing it because I have to go to appointments or go home sick. I want to not feel guilty that the people who love me have to worry and deal with me like this. I'm angry that I may have to deal with these issues for the rest of my life. I'm angry at everything that's happened, and everything that's going to happen, because I know I'm not nearly done having them happen yet. I'm angry that I'm worried about moving out because of this because I'm scared how I'd do on my own after surgery or because of medical bills. I'm angry that if I ever wanted a child, I'd have a 25% chance of being able to do it by myself without doctors intervening. I'm angry that I'd have to worry about a man leaving or not being willing to be with me for that. Or for how I look after having been sick.
I don't know what to do with myself anymore. I know that maybe it would help if I talked to someone about it, but I know that people are slowly running out of things to say. Maybe I need to talk to a professional, I don't know. It may be something I just need to learn to get myself through. I just know that right now, it's too much. Sometimes all you can do is cry it out and then wake up tomorrow and try to do better.
Monday, June 9, 2014
Wednesday, June 4, 2014
Visanne- The miracle drug?
When I went to see the new gyno specialist, she prescribed me something called Visanne. Visanne is a drug that has been used for awhile in Europe to treat stubborn cases of endometriosis. It only became FDA approved and legal in Canada in January of this year. If you're wondering why I've been given an endo drug, good call. It's not really known if I have endo, none was seen in my previous surgery, but lesions can be tiny or difficult to see with the infection I had. So it's possible, most likely not probable. But it's also been shown to help with chronic pelvic pain, which I do have, and chocolate/hemorrhagic cysts, which I have as well. It apparently does amazing things for symptoms and pain. But being that it's similar to a progesterone only birth control pill, it has plenty of side effects, which I was super anxious about. It deeply concerned me that I could be trading one poor quality of life for another kind. The common side effects for Visanne are depression, migraines, stomach pain, vomiting, nausea, hair loss, acne, weight gain, increase in other kinds of cyst growth, skin problems, and month long periods. Less common but severe side effects include liver damage or malignant liver tumors, blood clots, heart problems, and reproductive cancers. In prescribing this to me, the doctor has of course determined that the benefits outweigh the risks, but it's still scary to contemplate. Especially with it being a new drug here, and one that hasn't been extensively researched in Europe. It's really maddening and stressful to not know what it's going to do to you.
Yesterday was my first day taking it. I took it in the evening hoping to sleep off the worst of it, and I felt fine before going to bed.This morning was a different story. I woke up throwing up, with searing pain in my stomach and in my pelvis, approximately where the cysts are. I have a bit of a headache, cramping like bad food poisoning, and intense fatigue. I'm hoping it's just a system shock and will go away quickly, but hey. Welcome to pharmaceuticals. I'll keep updating on the progression of symptoms and results.
Ciao mi amors.
MRI & Colonoscopy
What a last couple weeks it's been. Lots has happened regarding care. I'll start with the MRI and go from there. For all my friends and family and boys I have crushes on, please excuse any graphicness on my part, I'm merely trying to give an honest detailed explanation for the readers who may have to do the same thing.
The day of the MRI was uneventful for me. You must stop eating and drinking 6 hours prior (this may be different depending where you have the MRI done on the body) and I did so without any real problems. My dad and his significant other kindly elected to take me to the appointment. As a note, if you get nervous or claustrophobic, please ask for sedation and make sure you have someone to drive you there and home. I decided that I'd be fine without sedation. I figured that if I can stay calm while someone has me in a rear naked choke (jiu jitus, people, jeezz..) then I can stay calm in the tube. I don't necessarily regret the no sedation, but it wasn't as easy to stay calm as I'd thought. So, now, the nitty gritty. They let me keep my nail polish on, but anything metal, jewelry, some kinds of glitter polish, piercings, implants, etc, have to come out or be told to the staff. You also have to remove all your eye makeup, I'm not sure why still. Your bra and any clothes with metal on them come off as well and they give you a gown to wear. You fill out a questionnaire and then you're taken into a little side room and made to lie down so they can insert an IV. That's not terrible, a small pinch and then cold sensation as saline is flushed through the line. You get taken into a room where the MRI machine is and you lie down on the table. They make sure you're positioned comfortably as you can't move for quite awhile, and they hook your IV up to a machine that dispenses the dye when they're ready to. When you're settled comfortably, they put these sort of heavy belts on you where they're taking the images. These are cameras. It's like wearing a weighted vest while laying down. I felt a little panicky because I don't like being restrained, but once I lifted my arms and found I could lift them off if I wanted to, I was fine. Before they leave the room, they insert you into the tube and I'm not gonna lie. It was tight. Not so tight that I couldn't have slithered out, but tight enough that I didn't have too much room to move. A tech will go to the open side at the top where your head is and reassure you that this side is open as well and make sure you're okay. They leave the room, and the scanning starts. Mine took about 45 minutes. They give you protective gear for your ears because the machine makes many loud sounds. Sometimes clicking or whirring or even banging. The table you lay on also shakes a teeny bit. Because the machine uses magnetic waves, it gets real hot in there. By the time I was done I was soaked in sweat and my skin was flushed. There's a nice little fan up by your face that blows cold air to make you more comfortable. I also got a little nauseated being on my back and moving (they slide you as needed, and of course the table shaking) and having only a solid wall to look at in front of me. Sometimes they have you hold your breath so that they can get still pictures. They inject the dye almost at the end oddly, and that was a cold sensation followed by a warm one in my lower body like when you pee in a really cold lake. Over all, it wasn't too bad. A few iffy moments and then it was done. They check on you every few minutes to see if you're okay. After that, no ill effects, went home and ate as normal. We're still waiting on the results both for cancer and cyst purposes.
A couple days after, I got to start my colonoscopy prep. At the risk of scaring off people who need to have one done, I'll say that this was NOT fun times. I'd been extremely apprehensive about the procedure all week because I already have so much pain in that area and I'd heard some horror stories. So when prep time came, I was not a happy camper. I'd been on a low fiber diet for the last five days to make prep easier, and you can't eat anything solid or not clear for two days prior. It starts by you taking 3 bisacodyl tablets to start the process of "cleaning you out". This may vary depending on what kind of prep you were given. You're told not to leave the house after you take these tablets for obvious reasons. Then you wait for 6 hours. Really, the only thing that happened then was stomach cramps from hell. This of course compounded the pelvic pain, but I took a percocet ( you're allowed acetaminophen) and it settled down. After the 6 hours, the fun really begins. By this time you're going to the bathroom quite a bit, and now you have to drink a liter of the electrolyte solution, which is designed to speed the process up and stave off dehydration. A glass every ten minutes, four glasses. I first tried to drink it straight because it's fruit flavored. Big mistake. It tastes and smells terribly sweet and acrid, like throwing up almost. That and the fact that large volumes of liquid makes me vomit, it was a struggle to keep down. I mixed it with lime crystal lite and things went better after that. I still spent my last glass huddled over the toilet in case it came back up. After that, I sat on the couch and waited. I wasn't able to sleep unfortunately due to bathroom trips. At 7am the day of the procedure, I had to drink another liter of the solution. Then I laid down and tried to nap. No dice. My mom and I got in the car awhile later and drove to the hospital. If you're smart, you will elect to have sedation or strong painkillers, and they will not let you go home until you have someone to drive you home. So bring someone with you. We got down to the GI unit of the Rockyview and checked in. Someone came to get me and brought me back to a room where they gave me a gown and had me take off everything except my socks. The nurse tried to insert an IV and had trouble because I was dehydrated and my veins were tiny. She finally got one in my hand, and it wasn't right/was sore the entire time. I still have a massive bruise from it. They give you saline and then later sedation. I was in tears, scared mostly. I had heard terrible things about a drug they use for sedation called VERSED, which is basically designed to make you compliant, and to cause memory loss after the procedure. The stories I'd heard were enough to make me decide I didn't want it, so I wrote on my intake form that I'd had a bad reaction to it previously. They decided to give me valium and propofol instead, as well as fentanyl, which is a strong painkiller. They took me into the room and showed me the endoscope (whomever thought that was a good idea, I'm not sure) and tried to calm me down a little. They said it takes about 20 minutes and that it would be a little painful, but no worse than what I could handle. I'm not a liar, so I'll say that yes, it was painful at parts. I was asleep some parts and awake watching the screen during some as well. The pain apparently comes from them blowing air into your GI tract so they can see better, and from the scope having to turn corners. Women have tighter and narrower corners than men so they have a rougher go of it. I was wheeled back to my room and left to sleep it off for about an hour and then I was given juice and cookies (won't make me forgive you, doctors!) and set free. I ate pretty much right after, and felt some grogginess. My hand hurt quite a bit, the bruise is enormous, and I had some very mild cramping the rest of the day. A few days after, I saw my own family doctor because I was having odd little back pains and very rapid heart rate which kind of felt like it was pounding out of my chest. She said that sometimes during the procedure, they can hit your phrenic nerve and cause those sorts of things til it settles down, which it did. All in all, was it as bad as I was picturing? No. Would I still feel anxiety about having another one? Yes. But I'm glad I did. Especially glad because they found no cancer in my intestines or colon. Which is great. With the MRI results, when they come, and a lung PET down the road, they'll declare me cancer free.
Hopefully those are the last of the major tests for awhile. I of course have ultrasounds often, and they'll reevaluate before surgery, but I'd like to be able to enjoy my summer with as little medical intrusion as possible. Fingers crossed!
The day of the MRI was uneventful for me. You must stop eating and drinking 6 hours prior (this may be different depending where you have the MRI done on the body) and I did so without any real problems. My dad and his significant other kindly elected to take me to the appointment. As a note, if you get nervous or claustrophobic, please ask for sedation and make sure you have someone to drive you there and home. I decided that I'd be fine without sedation. I figured that if I can stay calm while someone has me in a rear naked choke (jiu jitus, people, jeezz..) then I can stay calm in the tube. I don't necessarily regret the no sedation, but it wasn't as easy to stay calm as I'd thought. So, now, the nitty gritty. They let me keep my nail polish on, but anything metal, jewelry, some kinds of glitter polish, piercings, implants, etc, have to come out or be told to the staff. You also have to remove all your eye makeup, I'm not sure why still. Your bra and any clothes with metal on them come off as well and they give you a gown to wear. You fill out a questionnaire and then you're taken into a little side room and made to lie down so they can insert an IV. That's not terrible, a small pinch and then cold sensation as saline is flushed through the line. You get taken into a room where the MRI machine is and you lie down on the table. They make sure you're positioned comfortably as you can't move for quite awhile, and they hook your IV up to a machine that dispenses the dye when they're ready to. When you're settled comfortably, they put these sort of heavy belts on you where they're taking the images. These are cameras. It's like wearing a weighted vest while laying down. I felt a little panicky because I don't like being restrained, but once I lifted my arms and found I could lift them off if I wanted to, I was fine. Before they leave the room, they insert you into the tube and I'm not gonna lie. It was tight. Not so tight that I couldn't have slithered out, but tight enough that I didn't have too much room to move. A tech will go to the open side at the top where your head is and reassure you that this side is open as well and make sure you're okay. They leave the room, and the scanning starts. Mine took about 45 minutes. They give you protective gear for your ears because the machine makes many loud sounds. Sometimes clicking or whirring or even banging. The table you lay on also shakes a teeny bit. Because the machine uses magnetic waves, it gets real hot in there. By the time I was done I was soaked in sweat and my skin was flushed. There's a nice little fan up by your face that blows cold air to make you more comfortable. I also got a little nauseated being on my back and moving (they slide you as needed, and of course the table shaking) and having only a solid wall to look at in front of me. Sometimes they have you hold your breath so that they can get still pictures. They inject the dye almost at the end oddly, and that was a cold sensation followed by a warm one in my lower body like when you pee in a really cold lake. Over all, it wasn't too bad. A few iffy moments and then it was done. They check on you every few minutes to see if you're okay. After that, no ill effects, went home and ate as normal. We're still waiting on the results both for cancer and cyst purposes.
A couple days after, I got to start my colonoscopy prep. At the risk of scaring off people who need to have one done, I'll say that this was NOT fun times. I'd been extremely apprehensive about the procedure all week because I already have so much pain in that area and I'd heard some horror stories. So when prep time came, I was not a happy camper. I'd been on a low fiber diet for the last five days to make prep easier, and you can't eat anything solid or not clear for two days prior. It starts by you taking 3 bisacodyl tablets to start the process of "cleaning you out". This may vary depending on what kind of prep you were given. You're told not to leave the house after you take these tablets for obvious reasons. Then you wait for 6 hours. Really, the only thing that happened then was stomach cramps from hell. This of course compounded the pelvic pain, but I took a percocet ( you're allowed acetaminophen) and it settled down. After the 6 hours, the fun really begins. By this time you're going to the bathroom quite a bit, and now you have to drink a liter of the electrolyte solution, which is designed to speed the process up and stave off dehydration. A glass every ten minutes, four glasses. I first tried to drink it straight because it's fruit flavored. Big mistake. It tastes and smells terribly sweet and acrid, like throwing up almost. That and the fact that large volumes of liquid makes me vomit, it was a struggle to keep down. I mixed it with lime crystal lite and things went better after that. I still spent my last glass huddled over the toilet in case it came back up. After that, I sat on the couch and waited. I wasn't able to sleep unfortunately due to bathroom trips. At 7am the day of the procedure, I had to drink another liter of the solution. Then I laid down and tried to nap. No dice. My mom and I got in the car awhile later and drove to the hospital. If you're smart, you will elect to have sedation or strong painkillers, and they will not let you go home until you have someone to drive you home. So bring someone with you. We got down to the GI unit of the Rockyview and checked in. Someone came to get me and brought me back to a room where they gave me a gown and had me take off everything except my socks. The nurse tried to insert an IV and had trouble because I was dehydrated and my veins were tiny. She finally got one in my hand, and it wasn't right/was sore the entire time. I still have a massive bruise from it. They give you saline and then later sedation. I was in tears, scared mostly. I had heard terrible things about a drug they use for sedation called VERSED, which is basically designed to make you compliant, and to cause memory loss after the procedure. The stories I'd heard were enough to make me decide I didn't want it, so I wrote on my intake form that I'd had a bad reaction to it previously. They decided to give me valium and propofol instead, as well as fentanyl, which is a strong painkiller. They took me into the room and showed me the endoscope (whomever thought that was a good idea, I'm not sure) and tried to calm me down a little. They said it takes about 20 minutes and that it would be a little painful, but no worse than what I could handle. I'm not a liar, so I'll say that yes, it was painful at parts. I was asleep some parts and awake watching the screen during some as well. The pain apparently comes from them blowing air into your GI tract so they can see better, and from the scope having to turn corners. Women have tighter and narrower corners than men so they have a rougher go of it. I was wheeled back to my room and left to sleep it off for about an hour and then I was given juice and cookies (won't make me forgive you, doctors!) and set free. I ate pretty much right after, and felt some grogginess. My hand hurt quite a bit, the bruise is enormous, and I had some very mild cramping the rest of the day. A few days after, I saw my own family doctor because I was having odd little back pains and very rapid heart rate which kind of felt like it was pounding out of my chest. She said that sometimes during the procedure, they can hit your phrenic nerve and cause those sorts of things til it settles down, which it did. All in all, was it as bad as I was picturing? No. Would I still feel anxiety about having another one? Yes. But I'm glad I did. Especially glad because they found no cancer in my intestines or colon. Which is great. With the MRI results, when they come, and a lung PET down the road, they'll declare me cancer free.
Hopefully those are the last of the major tests for awhile. I of course have ultrasounds often, and they'll reevaluate before surgery, but I'd like to be able to enjoy my summer with as little medical intrusion as possible. Fingers crossed!
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