Getting some things off my chest.

I can't remember a time where I have been more frustrated than I am right now. And while I've been trying to hold it in and be positive, some days it's a losing battle. Last Monday, I had my second surgery in a year. An exploratory laparoscopy to see if the source of my pain could be found. Needless to say, I was apprehensive. About the pain, the process, the recovery, the very real possibility that nothing would be found and that I was doing it for nothing. But I recognized that I couldn't just do nothing, so I sucked it up and stumbled through the best I could. Imagine my frustration then at waking up after to hear "Well, you have a very angry and inflamed uterus and ligaments. But we don't know why, and we did nothing about it". At MY request, I was given two weeks of antibiotic in case it was some kind of infection or chronic PID. And then I was sent home with a follow up appointment in 6 weeks while she conferred with my other pelvic doctor in the meantime. In a way, I did do it for nothing. I know that I actually didn't, as it doesn't show up on imaging tests and now I can prove to people that I'm not crazy and there is something wrong. But it sure feels like this was more trouble than it was solution. And are the antibiotics working? Of course not. It's been a week of two, and maybe I'm just not giving it enough time. But I've been on antibiotics in the course of this year and it's never gone away. When I first started having this pain a year ago, and presumably whatever infection or event that caused the decimation of my fallopian tube, my tube probably looked like this. Inflamed and angry, and then too damaged to save. So is that what we're waiting for to do anything about it? For my uterus/ligament things to get so damaged that they just have to take them out? I'm supposed to give it more time, more time to heal or fix itself. But it's had a year and hasn't done it yet. And there's no reason, no cause, and therefore no assurance that it ever will. I have ovarian enlargement that probably means polycystic. But they aren't all that concerned about that either.

The last month or two, my digestive symptoms have gotten vastly worse, and new ones added in. I've had the nausea, vomiting, and fatigue the entire year I've had the other problems. But now it's so hard to eat that I just don't anymore. Either because my stomach cramps so badly that I have to stop, or my stomach distends so much that I get short of breath, or I'm full after 3 bites. I'm plagued by nausea 24/7, intermittent vomiting, unexplained rashes(I've had those the full year also though), swelling of my hands and feet, chills and sweating, and a host of other intermittent things. I've lost 11 pounds in the last month without trying, I've tried every drugstore remedy, tecta, proton pump inhibitors, eliminating the "trigger" foods like soy and dairy and gluten. I'm on constant prochlorazine or maxeron for nausea, now buscopan before every meal to keep my stomach from cramping, antibiotics, opiods for pain, codeine for pain, medication to help me sleep, low grade antidepressants that block nerve pain signals, birth control pills to keep ovarian cysts from growing, and all of the OTC meds that give me some relief.



I'm 24 years old, and I'm expected to just take this all and deal with it. Expected to alter my life so that it fits what I'm able to do with all these things happening in it. To accept "I don't knows". I'm expected to have a procedure almost monthly, surgeries, colonoscopies, endoscopies, MRI, CT, labwork, breath tests. To see specialist after specialist who give me no solutions. I see the gastroenterologists next month and if they fail to find a solution, I see immunologists and so on and so forth. And I still get to see the Tom Baker in 9 months to make sure no cancer has grown. I've spent a year of my life like this. With no end in sight. I know that I'm supposed to think positive and do the best I can. But I also know that I can't have a career if I have to keep missing work. I can't focus on school if I'm focused on symptom management. I can't train as an athlete if I can't eat. I can't compete if I'm on all these medications. I can't be that fun person that my friends want me to be. And I can't focus on healing if I don't know what the problem is. All I'm able to do now is manage. Manage life, manage symptoms, manage energy. I'm 24 years old. My life should be in its prime. Exciting, driving, building. It's unbearably frustrating to see that totally slipping away some days. And I realize, for all I complained about it, I was so incredibly fortunate to have the life I had before. I'd give much to have it back.

Darkest before the dawn.

I have taken a break from posting for awhile, mostly because I felt that I wasn't able to express myself truthfully because I'm so ashamed of it, and because I'm so frustrated with people around me(some of them) that I feel I don't want to explain myself to them anyways.

As an update, my cancer tests all came back negative which is amazing. They showed a few other things, polycystic ovaries, beginnings of liver disease from the heavy medication use, etc. I also have been to see the chronic pelvic pain doctor who confirms I have it. As some measure of controlling the pain, I see him every week for lidocaine injections to the pelvis and back. He also put me on continuous birth control to stop menstruation, and an antidepressant called Elavil which has been shown to help with the transmission of nerve pain. I still have percocets and toradol, as well as lidocaine cream.

There's no other way to say it, but that I'm worn down. I'm mentally and physically and emotionally exhausted. I'm in constant pain, a constant state of nausea and exhaustion from taking three different kinds of medications that are all sedatives and all in high doses. It's extremely hard to work a full time job when you're struggling to stay awake or not throw up or working through pain. I have no social life to speak of, less and less people that I trust or that have stuck around, and an increasing frustration trying to make it understood that I'm doing the best I can without seeming pathetic or like I'm making excuses. I'm exhausted of being afraid of injections and surgeries. Tired of being angry at people and struggling to forgive them, and chasing after them trying to make one sided relationships work. I don't know how to cope properly anymore and I can feel it building into something not pretty. On my darkest days, sometimes I question why I even got a second chance, because what kind of second chance is living like this?  Sometimes, I even wish that I hadn't gotten one and that the cancer or the infection had just killed me. I know that's deeply ungrateful and I'm more ashamed than I can say. But despite how hard I try and how hard I try to be brave and act like it's no big deal, my quality of life compared to what I had before is depressing. There's no other word for it. I'm committed to digging myself out of it, whether that means higher antidepressant doses or seeing someone about it, but I needed to express it so that the people around me understand that I'm not doing okay about this anymore. I'm tired, in pain, sick, and I just don't know what to do anymore.

I'm sorry, so sorry, for the pity party, and I'll try to resolve to be more positive. As always, thank you for reading and sticking by me and understanding.

Monster meds or monster me?

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.

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!

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