Chapter Two, A birth and a trip to ER..not the show.

Two events stand out as the real changing moments of my life. The first I didn't recognize as such... My niece whom I will call Lissie was born August 2003. My sister whom I will call Theresa was married to a bad guy for 10 years, had a child with him whom I will call Ella, and got hooked on prescription drugs, he divorced her and the rest was a downward spiral. She got involved with creep after creep until one creep knocked her up. I moved in with her temporarily to help out and after 3 days, took Lissie back to my mother so Theresa could rest some. As a result or maybe as a consequence, I don't think she ever truly bonded with her. She took her for occasional visits until at the age of 3 weeks while in Theresa's care, was present when her father tried to kill her mother. At that point Lissie really became ours. I had so many plans and dreams for her. When she was 3 1/2 we learned she was autistic. That really was hard because I wanted the same kind of relationship I had with my other nieces, and while she is very loving and we are blessed she isn't more severe, she can't really give back the same level of affection and bonding. Also, it makes her a ton more work and you have to think of things you wouldn't with a typical child. She practically has to have someone watching her every minute because she can be very distructive, and while she has some language, it is hard to communicate with her, and sometimes, it can be very stressful to be around her, especially for someone with anxiety issues. Sometimes just listening to her can stress me out, as she can be very loud and will have tantrums over the smallest things.

August 26th, 2009 will stand out as the other  life changing day... or the start of a lifechanging period you might say. Up to this point, I had a part time job, played games online, watched my niece sometimes for my mom, played with my cat, until he died the previous summer, and was basically oblivious to the turmoil around me. I had a few dreams...I was going to get a job, maybe go back and get my masters and be a librarian.

The bulk of that summer was spent finally learning to drive. I actually ended up getting my license august 2010 because some things got in the way but it was the first time I really got over my fears and started enjoying driving.

The first thing I noticed that summer was an increased sex drive. I did things I was ashamed of as a Christian. I am a virgin in the sense that matters, but I masturbated internally and externally, had cyber sex, and watched porn and read erotica. However, orgasms were becoming increasingly a mixture of pleasure and pain. I didn't think much of it, after all, what did I have to compare it to?

I lost 10 pounds. yay! I thought. Maybe my metabolism is speeding up. Then I had nausea that was so slight and gradual it really wasn't detectable. I would have moments of I don't feel so good, and as soon as it came over me it went.. Then I started having gagging spells in the morning. I joked I might be the only virgin who gets morning sickness. 

The other thing I noticed is my periods were getting more painful, heavier, and longer. I had just been switched to a stronger birth control pill to regulate because I was having a lot of breakthrough bleeding even while on lutera.

But on this day, everything came to a head. I remember waking up from a nap and getting up to get ready for work. I had this sudden sharp pain that made me double over it was so bad. I went to sit on the toilet and I had a bowel movement but I couldn't push or anything. The pain was so great it was like as the poop went through my colon it was stabbing me.After I was done I just lay on the bed sobbing it hurt so much. My mother immediately thought I could be having appendicitis based on the location of the pain, intermittent nausea and a slight fever so I went to the ER more worried about the fact I was uninsured than anything else. I had people pound on my stomach repeatedly (does that hurt, how bout this) it was like a black comedy, I really must have a twisted sense of humor because I look back on that ER visit and laugh. I was sent down for a CT. It showed some kind of mass but "we don't know where it is coming from, it could be infection from your appendix, it could be a fibroid tumor, we just don't know but your uterus might need to be removed" that last comment made me angry because a man said it and I felt like saying how would you feel if someone told you nonchalantly that your testicles might need removing? Anyway,  so they sent me down for an ultrasound. I conveniently left out the fact I was a virgin because I wanted them to do whatever they needed to do to get to the bottom of this so I let them put the wand thingy up me (after all, I seriously doubted I had any hymen left) and this "mass" was blocking the view of my left ovary, they couldn't see it no matter what they did. So the next step was an MRI. This is probably the most humorous part of this 32 hour ER visit. I go in and I swear he was a dead ringer for that indian dude on Heroes. beautiful english accent and I kinda dug him lol. Anyway, He put earphones over my ears because the MRI can be loud and I kid you not, the song that came on the radio as my back is killing me from having to be still while my side is throbbing intermittently and I am contemplating what the heck could be wrong with me was "if I lay here...If I just lay here...would you lie with me and just forget the world?" or otherwise known to Grey's fans as Denny's song (the song playing when Izzie is laying next to Denny's dead body... yeah major fan... anyway) Isn't that rather hillarious?

So to wrap up this segment of my story, a very sweet Russian doctor was fighting tooth and nail to rush me into surgery but money matters won the day. I was uninsured. I had to apply for a special insurance the hospital had for low income people before they would do anything. They told me it was one of those things they couldn't really diagnose without an exploratory laparotomy. So into the quagmire of medical insurance bureaucracy I went.

Chapter Three - money matters and being filleted.

So we last saw me leaving a bizarre E.R. I had my insurance appt 3 weeks later. By that time the nausea had turned to vomiting.Also the "mass:" had a life of its own and would get twisted somehow causing intense pain and it pushed against my intestines causing me to feel very sick all the time. I did qualifiy for the insurance and went back to the e.r. thinking, ok I am insured now so lets get this baby out. For some reason it has to be in the computer first. My Russian Dr did her best and she sent me home with her personal cell # to update her about my condition.
For the next two weeks I was a real wreck. I only later found out how close to death I was. I was bleeding profusely from an 18 day period each month, combined with my now 30 pound weight loss due to not eating and vomiting, my hematocrit was down to 22.7 indicating severe anemia.I think being obese worked in my favor a little because I had the weight to spare. Finally, I get the call. Surgery is tomorrow. come in right now for pre op.
I was so weak I collapsed in a ball of dry heaving a few feet from where I was supposed to go. I was vomiting bile into a sweat shirt because I was too weak to go to the bathroom. I then went home to somehow drink go lightly. nasty bowel prep makes me nauseous just thinking about it. I managed 5 glasses then vomited. Luckily I hadn't eaten solid food in 2 weeks so bowel prep was really not very necessary.
At the last minute my dr ordered a D&C  due to the amount of vaginal bleeding so I awoke 4 and a half hours later actually hungry! and even broth was delicious! I awoke to some bad news. They had to remove my left ovary with the fibroid tumor, but I still had a shot at having kids. No cancer was visable and I was going to be fine. My first stay in a hospital was a pleasant experience. Lots of nice drugs, friendly nurses and concerned family and friends. That week was one of the nicest in my life. I saw old friends I hadn't seen in years and I was the center of attention for a little bit.
I got a phone call exactly 1 week from my surgery from my Russian doctor. How are you feeling? She asks me. I told her I am healing faster than I even thought and felt much better. She pauses and says you are going to need another surgery I'm sorry. I am a little confused and I say ok, she says you will need a hysterectomy. report to oncology tomorrow.
All I could think about was no kids to name...no babies to breastfeed no strong yet gentle son to take care of me when I get old...Then it hit me...I have cancer.

Chapter Four - mortality, miracles, and a really big hole.

I now had a new identity. Cancer patient. somehow it was comforting. I wasn't this girl who had arrested development and morbidly obese and nothing really special, I was special because I might die. Everyone came out of the woodwork to give me food, prayer quilts, all kind of attention and love. For about a month I really grieved the loss of ever having biological children. Then something very strange happened to me. I didn't want children anymore. I didn't want the responsibility of one day dying and leaving them. I didn't want to ruin a child. I didn't feel like I could give a child anything they needed. I felt like a child myself. I figured if I ever "grew up" and got married I might want to adopt, but I was happy to put that on the shelf for now.
My oncology appointment was a little scary. I had talked myself into believing the night before that  they probably would get it all. Probably just a smidgen of cancer, nothing to worry about. "your D&C revealed cancer cells in the endometrial lining. We won't know much beyond that until we remove your uterus, but you have stage 1C ovarian cancer and we found a 1cm carcinoma on your appendix."
The second I heard the appendix I thought, oh Lord, it has spread already, I might actually die... and the other scary fact... I woudn't just need surgery. I would also have chemo. I would lose my hair. You have to understand that since I was around 18 I was addicted to hair salons. I kept getting it cut because it takes too long to grow out and I needed pick me ups. It made me feel beautiful. Well that whole year I had really committed to growing my hair out and I had finally gotten it past my shoulders and I loved the length. Now I was going to lose it.
So I was scheduled for the second surgery and I have to say, it hurt a whole lot more and they gave me less drugs... go figure. I eventually found out some rather shocking news. I had 3 separate cancers....all stage 1. The odds of that happening are very very very rare. Which means I probably have the brca gene or lynch syndrome... in a nutshell my genes are rubbish.
So after I got home I developed a bad infection called cellulitis and was put on strong antibiotics. Also, to add insult to injury, I can't have kids but yet I start producing milk. They still don't know why that happened but I had a good bit of milk for about a week. Probably hormones being jostled around combined with stress.
So Then they took the remaining staples out and said, we are going to have to open this... I didn't know what they meant until I saw them take a Q tip and start swishing it around until I had a hole in me the size of a silver dollar and about 2 inches deep. For the next 3 1/2 months or so we had to pack that hole and clean it. I call that the waiting period. Waiting for chemo, waiting to get on with my life. Just taking it easy, doing what I want and never having to worry about a thing. I didn't realize it, but the biggest challenges, and sorrow were ahead of me still.

Chapter Five -Closing the hole, Chemo, and Catastrophe

Finally towards the end of January 2010, I was finally healed up. I had a portacath placement surgery, which was the funnest surgery to date. I was in twilight sleep and kept waking myself up snoring. It really didn't hurt more than when you sleep wrong and your shoulder is sore. Meanwhile my mother had been having some pain in her side for months. One Dr told her she probably cracked a rib and to go home and tape it up. Finally a dr ordered a chest x-ray. She had a mass in her lung the size of a lemon. So while I was having my first chemo, she was having a biopsy.
First I want to discuss Chemo. Initially, besides some boredom, actually having it pumped into you isn't bad. I got to be close to my chemo nurse and it is hard to complain when you are relatively healthy and you see all these people on death's door. For about the first week following chemo I experienced massive indigestion, like when you eat cold greasy chicken and burp up that unpleasant taste. Also my skin on my face got red and uncomfortable. Not as bad as a sunburn but maybe like windburn. And it was rather waxy. I wasn't fully prepared for the joint pain and fatigue but it passed in a couple days. Fatigue was something I lived with every day of this journey but sometimes in those few days following each chemo I barely had enough strength to move a computer mouse. Basically it was 1 week feeling like crap, and 2 weeks recovering from feeling like crap. Then it started over again. However I had no nausea or vomiting during the first 3 of the 6 treatments.
My mother's first biopsy was inconclusive. I thought, well that means it probably isn't cancer or is only slightly cancerous or it would have shown up. I don't know if I was selfish, or just too full of my own battle, but I never for a moment worried about my mom during this stage. I had my head shaved in March once my hair started coming out in clumps. I enjoyed my hats and scarves. The wigs never felt natural. I actually didn't look all that bad bald, but still it was a shock and really hard on my self esteem. I didn't feel like a woman anymore. My eyebrows thinned and eventually fell out. Then my lashes. When my lashes came out that is when I was the most depressed. Mascara out of all cosmetics has always done the most for me. To this day, my lashes aren't as long and thick as they were before chemo.
In mid March, 2010, my mom had her second biopsy. I don't know if they told her more than she shared but she basically said it is cancer. I don't know anything else than that. Even then I didn't panic right away. Maybe she will go through treatment with me. Even if they can't cure it people have lived years in treatment. I just wanted some time. Some real time to be with her and say goodbye. But more than that, I needed time to instantly grow up and be responsible. I also was feeling some rather shameful feelings. I felt upstaged to a certain extent. I had cancer, and I couldn't be special and have that to myself. I was in a very weak state and here I now have to deal with the mortality of the most important person in my life. My dad and brother are very weak people and my mom was everyone's all in all.
It all came to a head around April 15th. That was D day. The day we would find out the worst. She had stage 3B Lung cancer. Statistically the 50% margin where 50% with that stage are alive and 50% are dead was 13 months. But that means 50 out of 100 are still alive. She could live years. I started the bargaining process with God. Give me 5 years please. I will get a job when chemo is over and I am stronger and I will figure things out. A lot can happen in 5 years. The rapture could happen...yes Lord, please rapture us before my mom dies. If that isn't in your plan please give me 3 years... 3 years would really help. This process went over and over in the months to come, but basically the main point was she was going to die, I was not. I so wanted it to be the other way around. I had to become strong even in the midst of something debilitating like chemotherapy. I was no longer the patient, even though I felt like it. I had to be the caregiver. That was not a role I wanted, but I was really all my mother had.

Chapter Six-surviving domestic violence

This is probably going to be the hardest chapter for me to write. I need to explain some things about my brother. He is borderline retarded. He had behavioral problems all throughout school and is like a 12 year old in a man's body. He was jealous when I was born because he had been the baby. We used to be really close when I was a kid. I saw a few violent outbursts over the years, but nothing like what I was going to go through.
Just an FYI, he had hit me before, usually one of those split second moments when you shock yourself and are so sorry afterwards. There was a time when he broke down the bedroom door to get something that belonged to him. He slapped my mother once and when I tried to get between them I was pushed into a glass mirror and it broke. We have lived in the same apartment for 16 years and I still am worried about what the landlady will say when she sees the destruction in this place.
But I never got seriously hurt in any of these altercations. Well, the day we found out about my mom's staging, the subject of Lissie got lots of play. I couldn't raise her. My mom didn't even want that for me, she wanted me to get out and have my own life. I was so sick and Daniel, my brother, kept saying, you don't have cancer anymore, you just want to be free of all of us. You are selfish, and the like. Then he exploded and started hitting me with a shoe over the head. All of the sudden, his hands were around my neck and I couldn't breathe.I think he pushed me into a wall and I hit my head, the details are fuzzy and it was over very quick. I managed to call out to my dad to call 911 and that shocked my brother to stop and he ran out of the house. What followed was he tried to kill himself, was taken by ambulance and got combative with cops, was arrested for that, but basically got away with it. My mom spent so much time consoling him and all I could think about was what about me? My head still hurt, I had a black and purple eye, I had to tell everyone I fell down the stairs. I did eventually go to the E.R. with that story and got checked out. I had a hairline skull fracture but nothing else. I went through a bad patch after that. I was afraid for my safety. I started packing up my possessions, trying to control my environment, and basically imploding in an anxiety ridden state. All I could do was worry. I cried, I had panic attacks, I think I went through a little PTSD, I don't know,  and I am still not totally back to normal, as reliving this as I write causes me to tear up. I have since forgiven my brother. As Jesus said, he knew not what he was doing. It is still hard to trust him, and I will talk more about that later, as this isn't the last time he would scare me beyond all reason.

Chapter Seven - Survival mode, anxiety at it's worst, and what's the worst that can happen

So last we saw me I was a victim of domestic violence with a seemingly well mother who had a time bomb in her body, and we didn't know what time it was set for. I was afraid of my brother, afraid of being homeless, afraid of my niece going into foster care, afraid of losing the only person who really and truly loved me the way I needed to be loved, afraid of letting everyone down, and feeling guilty for wanting to run as far as I could from everyone. Anxiety is the worst thing I have ever experienced. Depression was bearable in comparison. I was so tired. I felt like crap from chemo and more and more my mom needed me to take care of Lissie.Also, in April I crashed our car into the garage. (my dad told me I could back in and I was clear. Rule #1 never listen to my dad.) Not really a big deal in the long run but made me want to die. It was the catalyst though, to having me start driving school and I finally got my drivers license August 2010, which was the absolute most positive thing that helped me to that point. I think that was the time when I began to think, everyone has one thing they are afraid of, and they say I could never survive that, anything but that. I have had a lot of those moments from then til now, and I see that even if I think that will just kill me, it never really does.
May was a hard month. My mom got pneumonia and had to spend a week in the hospital. During that time, I had the worst chemotherapy round of them all. I was so sick, but I had to take care of an autistic child all by myself. To this day, I hate the barney video she watched over and over during that time. I had to figure out how to do laundry all by myself for the first time. That is pathetic sounding but you have to remember, my mom never taught me this stuff. I was so scared of doing something wrong and I cried constantly that whole week. If my mom had died that week I don't think I would have survived it without going into an institution or something. Around this time I started therapy and Welbutrin and it took a long time but I think it helped. From this point on, my mother had to be on 24/7 oxygen. I tried to control my anxiety by packing up posessions, because my thought process was I wasn't going to be able to do it myself when she died, and I needed her to help me know where everything was. I got rid of a lot of stuff. I wanted to travel light, I really thought I was going to be out on the street or something because I just was a bundle of nerves and was so scared and didn't think I could really do anything by myself.
I finished up chemo, and in July my mom went to the oncologist and decided not to pursue treatment. I am so thankful she got to see me get my driver's license. That august was the beginning of me finding my confidence. I could drive like an adult. I could do anything I set my mind to. I think it was a combination of my meds kicking in and my coping strategies, but whenever something overwhelmed me I found something I was capable of. I am capable of washing these dishes. I am capable of packing this box, etc. I just decided to do project after project. When something got me down, I researched and I figured it out. For several months I had been getting Lissie off to school, going for a walk and journaling, and just getting through the days. I kept saying when I felt better I was going to find a job and move out. I knew deep down that mamma had to die first, and that made things kind of difficult in my head. I didn't want her to die, but I hated the status quo. I didn't like to be entering the unknown, I wanted a plan, I became a control freak. I got upset if anything was sprung on me, and I really wanted a blueprint for the rest of my life. I went to this class about how your life is like this circle with wedges. When one is out of whack, the wheel won't roll and stuff like that. It was how to plan your life and fix things. I think it helped a little but I still was really messed up inside.
In September, my mom entered hospice. They were wonderful and it was really a necessity because doctor appointments were getting difficult for her. Those months with hospice were really hard for me. I didn't want to be around my mom because she wasn't my mom anymore. She smelled bad because the cancer made her sweat a lot. I couldn't hug her because it hurt her. Also, part of it was she couldn't do anything for me anymore. That sounds shallow and mean, it isn't that I didn't love her anymore because I couldn't get anything out of her, it is so much of our relationship was her taking care of me. I didn't know how to reverse that. I did my best but I felt so lost. And whenever I looked at her I felt so sad, because I couldn't do anything for her. Then in October, I had to have a hernia surgery. It was not a big deal and I healed quickly. My mother really made me mad with a comment, not again, you had your turn already what am I going to do without you? I was praying to die on that table. That is so selfish because my mom needed me. From that point on for most of the next 2 1/2 months or so, my sister, Theresa came over every day, helped me with the housework. got me through the surgery, and kept things going even when I was well  so I could take care of my mother, and helped take care of her daughter. I think that was what I needed for many reasons. I saw that I wasn't truly alone. My other sister, Tara, also was a big help and came over more often. I can't remember exactly when it happened, but I think the crossroads was when I talked to a social worker and she said I could always call cps to take over with Lissie, but once I crossed that road it would be difficult to go back, but I could just take one day at a time and try to raise her.

Chapter Eight - November-the month I hate the most

I think I can honestly say without hesitation that November 2010 was the worst month of my life. There is a lot of specifics I can't really remember during this period but I will go over the basics. First of all, it was the last time my mother was well enough to pay bills and do basic business. She never left the house of her own accord after November 3rd. That is when she began the real process of dying. We had to set up a hospital bed at that point in the living room and she never went upstairs again.  Our days were basically spent dosing her with meds, helping her to the bathroom, and trying to give her what food and drink she could handle. I remember one day close to Thanksgiving, I needed her to sign a check and she couldn't manage to do it, and that is when I realized she was really going away. It got so bad for me, that even though I was still scared of what lay ahead, I was mentally ready to let go of her. I was already mourning the mother I lost. Her funny wit, her comforting presence, even arguing with her. Then came the Thanksgiving that made me hate that day. At some point in October, our secret about Daniel's violence was revealed to my sister Tara, because he basically cussed her out and let lose years of resentment. Never did it get physical and he was the one who removed himself from the house, but it did nothing to help my anxiety and I came clean about the real reason I went to the E.R. in April with my sister. I don't know if I was correct or not in that but I desperately needed to reach out to someone, not that it did a lot of good. Anyway, I hosted thanksgiving for the first time, which gave me a sense of pride and accomplishment. I was worn out from cooking and taking care of Lissie and I still don't completely know what set it off, but I think it had to do with Tara sounding bossy (which is second nature as the oldest sister anyway) she merely told everyone to turn their heads that my mom had to go to the bathroom (she had a portapotty in the living room) My brother really went off on my sister and told her to get out of the house. I had a huge mess in the kitchen still to clean up and people were still eating and there were the other nieces present. It never really got physical but the PTSD I talked about before really got to me, and I couldn't stop crying all night. What is worse, my mom was conscious and begged him to calm down which broke my heart. That was probably her last real conscious moment and I don't want to say I will never forgive him, because I have, but I would hate to go around with something like that on my conscience.
At that point I was motivated beyond all reason to get as far away from him as I could. I just wanted so badly to find a safe place. I think part of me wanted him to just kill me and get it over with, I do know that I blew it way out of proportion in my head. but I was really afraid of him. From that point for a few days, things were tense and my mom went into a coma. We slept over monday and tuesday night. Something told me we were very close. Aside from my brother, whom I still had a lot of negative feelings towards, I felt so close to my family at that time. At sometime between 5:15 and 5:20, my mom passed away. I want to say I felt her heart stop but I can't be positive. I was completely numb and went through the motions of what had to be done for the next few days.   Even to this day months later, it still doesn't feel real. I feel guilty sometimes for being able to go on so relatively well when she was the most important person and still is the most important person in my life. It almost seems like she was never here most of the time. I guess it has to be that way in order to cope. I still have things of hers to go through, it is still too fresh and raw at the moment. I read grief tends to peak at the third month and that makes a lot of sense because, as I will write about, a lot of practical matters had to be dealt with in the months following her death that only now, every once in a while I think, I need to ask momma, and she isn't here and it is like someone punched me in the stomach. Also, when I get overwhelmed and exhausted and everyone fails me in some way or another, my gut instinct is to go cry on her shoulder and she isn't there. I know I will see her again. I don't think God lets people that have passed on look down on us because I can't imagine it being a pleasant thing to look down on this world, and there are no tears in heaven, but I hope now and again he tells her how much I love her, how sorry I am that I took her for granted, that I am okay and doing pretty well all things considered, and that I look forward to seeing her again.