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.