Insomnia Driven Musings

If you ask someone where they'd like to be a year from now, most have all kinds of grand answers. They want to graduate, or get a promotion, or obtain the ever elusive bikini body, or be married, or have a child, or travel some place glorious. They see themselves reaching goals. Moving forward. Building a life. I wasn't any different. I wanted two or three jiu jitsu belts, to be a successful nutritionist, find a nice boy to date, move out. And I had no reason to believe I wouldn't obtain these things because like most people, I assumed I had all the time and opportunities I needed. This month marks a full year since this medical journey began. And what I've learned this past year is that if I'd known or had any inkling of what it would be like, I'd have done a great many things differently. I'd have been pushier that first time I went to the ER and not let them send me home with a few pills so that maybe I could have emerged with my reproductive system and fertility intact. I'd have been a lot less nonchalant laying in the hospital for days sort of enjoying the break and the attention (and the morphine). I'd have been a lot more concerned about that surgery if I'd know what it would do to my nerves and how much damage I'd still have a year later. I'd have stood up to the doctors who thought it was okay to call me out of the blue one day on the phone and say "You have cancer, but we think we got it all. But we'll have to check" and the doctor who told me there was absolutely nothing more she could do for my pelvic pain because she'd already operated and couldn't see anything else to fix. I'd have fought harder when I went to the ER with a cyst bleeding into me and they sent me home, if I'd known the shape my pelvis is in now. I'd have eaten healthier and kept at the rehab workouts I started so that maybe this autoimmune stuff wouldn't have progressed. What I'm saying is that in no form did I conceive that I wouldn't be perfectly mended and back to normal by now. And really, nothing turns out the way anyone pictures it. But I still struggle with this reality. I pictured a healthy, vibrant, healed life.  I guess I thought I could compartmentalize that whole episode and everything would go back to normal. Nothing is normal anymore, but I can say that some good did come of it. I'm a far stronger person now, and looking back on an entire year of pain and sickness and procedure after procedure that I braved shows me that I have the capacity to overcome much more than I'd have given myself credit for. The love and support that I've received from family and friends and coworkers has been amazing and has let me know what great people I have in my life. If I had hopes for this next year, they'd be very similar to the ones I had last year. There are some things I'll plan and strive for but I know that realistically it won't be the year I hope for. Some days that's a bitter, bitter thing. The other days I try to steel myself and remember that where there is life, there's hope. And just because it may not be the year I want doesn't mean it can't be a good one in ways. There are times where I want to throw in the towel. To simply stop working, be on disability, stock up on pills, stay at home, and live the medical life I seem ordained to live. But I don't want that life. I'm not ready to give up on the dream of having a normal life where I get to do everything I dream. I'm not ready to let go of that yet. So while, having learned what I've learned, I will curb my expectations of what the next year brings, I won't give up hoping and fighting.

I may wish things were different. But as Gandalf says, "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.".

Endoscopy

Something has been bothering me today. It started out as sort of an unconscious niggling or feeling that something wasn't right. But as I tried to go eat some delicious cbs fries, my painful stomach made the problem apparent. It's so odd isn't it, the way something happens and you think you've handled it, only to have it rear it's ugly head sometime after.

I'm talking about the endoscopy and biopsies I had yesterday. And while I was initially very sure it hadn't been a pleasant experience, I assumed I'd put it behind me with gratitude that it was over. But today it made an appearance in the form of mild panic, anger, tears, and an upset stomach. I'll explain. 

When my endoscopy was scheduled, it was with the same doctor who had done my colonoscopy. It was agreed I would have sedation as I have developed a growing phobia of medical procedures. On the days preceding the endoscope I tried not to be worried and comforted myself that I would be out like a light and waking up after with no recollection. I was pretty calm as we waited in the waiting room yesterday for me to be called back. I finally was and the nurse sat me on my bed and began to ask me questions, til we got to the "any allergies?" question. I replied that I have an intolerance to Versed, which is one of their sedation drugs. Thus the nightmare began. The terse reply I got was "well, we're out of anything else so you'll have to do it without sedation." She then left and as a symptom of the panic bursting up inside me, I burst into tears. Tough, right? I continued to cry as nurses came and went, put an iv in my hand, and once offered me Ativan to calm me down. I remember asking what happened after that then, when I got into the room, because I didn't want to do it without sedation. She just smiled and patted my arm and said the doctor really wanted to do this test. I agreed to an Ativan, of which I did not feel a thing probably because I was so upset at this point. Maybe five minutes later a nurse came back and said it was my turn. I was mute and shaking by now as I was wheeled in to the endoscopy room. Inside a nurse was setting out the endoscopy tube, another folded my pillow in half and told me to lay on my side facing her and that everything would be alright. I was still crying as my GI doctor came in, she asked me to stop crying, sighed and said "do you want to do this or not? We can stop" At that moment I felt a little stupid and a little ashamed and afraid of wasting anyone's time or worse, having to do this all again. So I said yes, we could do it. The nurse gave me a small amount of fentanyl to slow my gag reflex and put a plastic bit in my mouth to guide the scope. There was no preamble after that. The nurse had me grip the bed and told me to take deep breaths. The scope, which is about the size of a pinkie finger and cased in hard rubber, was pushed down my throat, through my esophagus,through my stomach and into my duodenum. The whole time I was gagging and vomiting up clear liquid which the nurse kept ordering my to spit out around the scope. Finally it was in place and then biopsies needed to be taken. So tools were swirled down the scope in rapid jump rope like motions, and then pressure when the biopsies were being taken. The scope had to be pulled out part way to get at my stomach and esophagus and the pulling out created whole new rounds of gagging. My doctor kept telling me I was doing so well, better than she expected, but I was fighting to not throw up. Every time I gagged my throat would close, but it would close on this hard rubber scope that was in the way. The scope was withdrawn when she was done and I did throw up then. I was shaking and hyperventilating, the nurse gave me an oral medication to help me calm down as my blood pressure was super high. The nurse asked me "are you glad you did it, was it okay, even though it was uncomfortable?" Which I thought was strange and my doctor asked me about my Halloween plans and told me about what she saw. Then I was wheeled back to my room and told to rest, and I just cried. Awhile later they let me up and let me go home. Now I thought, was this their fault? Was this my fault for not speaking up and saying I didn't want it if I didn't have the sedation? It's probably both. They were trying to be kind, and just trying to get it done, but it wasn't what I signed up for. And sure, people elect to have this procedure done without sedation, but that is their CHOICE. And I was left all the more feeling cheated because though I maybe had a choice, there was pressure not to exercise it, to just brave up and do it. The never ending parade of medical procedures, almost one a month now, already has me raw and off put. I didn't need a new reason to fear them, but now I have one. And I can't help feeling that for most doctors, after so much time and effort on their parts, I'm just a numbered patient that they're on a mission to cure. Instead of a girl who's afraid and didn't ask for this and doesn't want to do this. Yes, hospitals are understaffed and on a time crunch and doctors have more pressure than ever to treat more patients. But I don't deserve to be treated harshly and then sent off until the next round. Friends tell me what I'm feeling about it is normal and it's okay, and anyone would feel violated or mislead or upset. But it's not okay, because I'm not even close to done having to submit myself to tests and procedures and nurses and doctors. And I can't help being afraid of coming out with more than just physical marks to show for it. But you just keep on being strong, because there isn't any other option. You keep on saying yes because there's no giving up. 

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!