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!

Late nights & sleep fights

I'm lying in bed 100 percent unable to get to sleep. My mind is racing around like a "spider monkey hopped up on mountain dew", as a friend says.

My MRI is tomorrow. Colonoscopy Monday. In theory, provided that none is found, this cancer thing could be over for me. Of course, the problem with that is that maybe it's over, but the consequences aren't. Some people I know think that because I'm not having to go through chemotherapy or radiation, it should minimize the hugeness of the experience. That I should go on as if it never happened because I got off scott free. In some ways I agree. I know brave, brave people going through chemo and treatment, and in comparison I cannot call myself anything other than lucky. And I know I am. But some things just leave stains behind. There is constant fear now. Fear of what's going on inside your body that you can't see. Fear that any new symptom, even if it's just a cold, means carcinoid syndrome. Deep deep fear of what would have happened if they hadn't found it, because I know the prognosis for neuroendo cancers are grim. There's a deep feeling of betrayal because your body turned on you. You feel uncomfortable in your own skin now, and a little alien. You start to resent your body for not putting up to get you what you want in life. You develop almost this neurosis around needing to know why this happened. Why me?  Was it something I did?  What causes it, what makes this happen?  A need to understand, because if you don't understand or know why, then how are you supposed to keep it from happening again?  And you can't. There's no way to know or prevent, and that loss of control is terrifying.
Maybe most irrationally, there's guilt. Guilt because my cancer came out and I survived. I didn't even have to have treatment so far. So many others, including people I love, have not been so lucky. They handle it with such strength and grace, and I feel as though I handle it so poorly even though I am far less entitled to. I'm no better of a person, so why was I let off the hook and they weren't?  They don't deserve to be sick. This is something only people who have gone through this understand maybe, anger at getting sick, anger at surviving.

Perhaps the worst thing in my mind is that one day, maybe 70 years down the road or however long it takes, I will maybe die of some kind of cancer. Maybe a car accident or a heart attack, but possibly-likely some secondary different cancer. So I feel sometimes like I haven't beaten it so much as borrowed time. We all have to die eventually,but to die because of that would be a bitter pill for me to swallow.

In essence, I'm scared that this will continue, but I'm scared about it ending too, because I don't know how to really deal with either. Sometimes I wish so hard for the life I had before any of this started.

As an aside, symptom wise, I had a lot of pelvic pain and nausea today. As I'm laying in bed, my tummy is uncomfortably rolly. But I learned a neat trick from a very drunk friend, which is to lay down in bed with one foot hanging off and flat on fhe floor. This gives your body solid sense of equilibrium, and what do you know?  It works! That's my contribution to cancer patients and drunk peoples alike.

Ups and Downs.

The last few days have been kind of a mental gongshow. As in, I have felt utterly defeated.

There are the normal things that one would expect to bring you down. I have an MRI this friday both to determine what the masses growing in me are, and to see if I have cancer anywhere else that we didn't catch. That's scary on its own, but I'm not relishing being stuck with needles and pumped full of dye and then stuck in a tiny metal tube for an hour. On monday, I have a colonoscopy. Sexy eh? I'm actually terrified in all honesty. I already have a lot of pain in my pelvis from masses and nerve damage, and I know that you're sedated (conscious sedation - still awake!) but the idea of having to do it is enough to make me want to cry. The prep for it is enough to seriously turn anyone off , I'm going to be so hangry and I can't be more than ten feet from a bathroom for two days prior. And then of course I'm afraid of the actual procedure being intensely painful and uncomfortable. Ehh, write now, cry later.

Then there are things about this experience that you never would have thought of or expected to upset you. At first you seem so concentrated on the what-ifs, hows, whys, etc of illness. And then as it progresses and you get sort of used to living with it, other odd things come up that just hit you some days. Like the physical changes. I've never been a self conscious person ever. But due to things like swelling, weight gain, acne, surgery scars, and a whole bunch of other appearance changes, I'm feeling less than beautiful lately. I'm also increasingly gun shy when it comes to dating because of this odd mindset I've developed that no one wants to date the sick girl. I'm sure this isn't true of many wonderful guys, just something my brain has cooked up. Being sick can be a lonely thing. Sometimes people just can't make it to appointments with you, and you get scared and need comforting. I think the thing that hit me the hardest about all of this was the abandonment from people close to me. I understand that illness is hard for people to handle, and some just aren't capable. But I didn't expect it to be some of the people closest to me who disappeared. No visits in the hospital, no calls, no checking in on me, and sometimes stark ignoring. It feels sort of like...now that I'm not fun or as able bodied or now that I have to make time for being sick, I just stopped being as important. This was a really hurtful thing to handle. If there's any advice I can give to friends/family/caregivers, just let them know you're thinking of them. Ask them if they need anything. If they need to talk. It goes such a long way. I really wish some of the people I love had done those things, because even though I understand not everyone can deal with this, I know I'll never think of those people who jumped ship the same again. There have been people though, who have been amazing. My family, friends, people who have just come up out of the wood work to show love and support, and I'm really blessed in that regard.


I needed to vent all of that desperately, so thanks for listening!

I'll be posting about my MRI on Friday, what it entails and how it goes.


Xx

Appointment Funtimes

Yesterday I had a meeting with my new gyno specialist,  as my old one had decided she had done all she could. The result was both good news and bad. The good news being that she was willing to help me. The bad news is that I get to have surgery again. It has been scheduled for September 15. I've also been put on an experimental medication that is commonly used in Europe for endometriosis (they're not sure I have that) that is supposed to reduce the nerve pain and reduce the growths. If it works well enough, the surgery could perhaps be cancelled, but so far everyone seems to think it's a good idea to get in there and see what's going on. It's hard to properly see what there is in there with just diagnostic imaging.

The surgery date unfortunately means that I can't go to school in the fall like I had planned, so that was hard to swallow.

While I was digesting all of that, I went to grab something to eat and wouldn't you know it, someone rear ended me. Smashed right into the back of my car. So I'm quite sore today, especially where the seat belt crushed my pelvis where the cysts are.

Whew! What a day. When it rains, it pours, as a good friend says.

Feels.

November 2013

It's been 6 months since this all began. It seems like a long time, but it's nothing when you're living it. I guess I should start at the beginning, so that my ranting and raving later makes sense. I want to make it known first that I'm not seeking attention, or donations, or pity. I just know that the harder I wall up and keep things in, the harder it is to heal. I also know that cancers and chronic pain and the other medical issues I've experienced aren't common in someone my age, and I'm hoping that someone else may be able to find comfort or answers in my journey. So, here goes...

I can remember one day in late October walking down the halls of a mall shopping by myself. I felt a moment of odd heat in my lower abdomen and then a feeling like someone had stabbed me. It went away after a few moments, and I continued to shop, my need for a new purse outweighing my concern. A week later I was at work. All day I'd been having terrible nausea and a heavy ache in my pelvis. The pain got worse and worse as the night went on and I knew something was not right. By the time my shift had ended I'd been advised by healthlink alberta to head to the ER. I drove myself there, and was seen by the ER doctors. They ran tests, which all came back negative, but the doctors were convinced I had pelvic inflammatory disease. They sent me home with painkillers and a few days of antibiotics. I spent the week at home on the couch in pain. It never got better and by the end of the week I had returned to the ER. Doctors were a little more concerned, as I was showing symptoms of appendicitis, and they admitted me to the hospital and began to flood me with IV antibiotics. By this time, symptoms were severe. Nausea, vomiting, tachycardia, pain in my pelvis and lower back, a host of "bathroom" symptoms. I stayed in the hospital for a few days waiting for the antibiotics to kick in, but they never did. I was scheduled for immediate exploratory laparoscopy. When I woke up, parts of my reproductive system had been removed, as had my appendix. All too damaged to save. It's unknown why they were damaged. They thought it was an infection, but they assume now a cyst had grown and ruptured and caused severe damage.

The appendix was a different story. About a month after surgery, I was called and told over the phone that a rare kind of cancer had been found in it. Neuroendocrine carcinoid tumors appear mostly in your lungs and digestive system, are exceedingly rare, and have a poor prognosis. My tumor was found at 0.8 cm by complete accident. The cancer doctors believe they got all the cancer out in surgery, but this kind of cancer is notorious for having more than one origin site, and can appear in more than one place. I'm also very young for it, so I'm going to be undergoing tests to ensure I am cancer free.

On the non-cancer side, for the last six months, I've been fighting chronic pelvic pain, chronic symptoms, and hemorrhagic cysts. There have been CT scans, ultrasounds, ER trips, and more doctors than I care to count. Getting someone to take my pain and symptoms seriously after they believed they had done all they were supposed to has been a nightmare. I've been told that cysts are normal (some are), been put on opiates (even though I have a history of painkiller abuse), and turned away from ERs. The last little while, I've been really down about all of it so I thought that I'd let go of it all a little bit and try to get it off my chest.

I'll be writing a lot about the processes and treatments and tests and all of the technical things, trying to spread awareness of early onset cancer and diseases, but a lot of it is just for me to vent and gather my thoughts.

Thanks for reading, and for sharing this process with me.