Terminal Cancer

As I may have mentioned my soon to be husband has cancer. He underwent a lung biopsy. We were so sure that it wasn't in his lungs- well he was. I was hoping and keeping the faith up that it wasn't there. Today (now yesterday) we got the news that it is in his lungs. I've gone through a miriade of emotions. I now understand what people mean by heartbreak.  When I first found out he has cancer I fell to the ground however he fought. He's been fighting and his spirits have been so good. I know that contributes to the longivity of cancer (and all) patients so I of course have been hiding my own. And to my own detriment. Today though it felt as though the world was spinning just too much. Shock first kicked in. The logical side...and then being today is the day I am with my best friend I sobbed. I took a bath and went downstairs back to my place and fell into his arms crying and crying until 5 minutes pass and he had to go. He preodered some food while I was gone. And then we started talking about the tree (for Christmas) and he said we were running out of time. He meant the tree and I just couldn't talk until I finally lost it festering thoughts of time running through my mind and I walked out the door yelling "yeah we are running out of time...WITH EVERYTHING" slam went the door. I cried more and more until I got to my friend's again. I am not a person who can easily cry in front of people. This time was different when I first told her I was at her place and she went to hug me. I didn't want to be touched. I honestly don't know what I want. I don't know what I need other than some time to understand all of this or at least come to and understanding that there is nothing to understand. My soon to be husband doesn't feel anything. He admits this and blames the fact that his family does the same thing- blocks all emotion. I am greek. I block emotion however this is his mortal life we are talking about. I pray every night that this will all go away. I wish we'd have heard this together because I have a ton of questions however it was told to him over the phone. Stage IV cancer confirmed. So how much time do we have statistically speaking? Will he be the father of my kids...I already know the answer- no. I have no money to adopt. I have been saving money for a wedding that is a civic wedding and it means everything to me. He's gone through many. This is my first and my first love. This isn't fair...I don't want to blame him. It's not his fault however I feel so angry...so angry and so selfish. And that makes me feel guilty and embarassed inside. That's why I am trying to get this out. I finally let someone in and while we all die...no one diserves disease and the chaos it brings. I am so tired physically yet my mind won't stop. I can't control this. And I won't leave him (others have told me that's what they would do...if you are one of them stop reading this blog or at least know that I think you are a pathetic maggot if you'd do that esp. when the relationship is still good). I tired calling my therapist and paged her but she didn't get it. Oh well...on my own again. I just want to disappear...sometimes I think this is all my fault. I know that is impossible however this is plaguing us. I want his cancer to just DISAPPEAR...I don't really want to disappear. No. I want to write, publish and be a career recording/touring vocalist. And I want him to be front and center watching it and living his own dreams as well. Right now that feels like it's been burned to hell. My life has been so hard...I can't take this one though. Four years we've been together and one of us has been terminal...we deserve a break...we deserve to live healthfully together because without health you don't have anything.

Alley

Tiffany

Hospitals aren't friendly places however there are times that a complaint actually does go through. You can be rest assured that your claim is unimportant unless someone who's boss works for legal contacts you with compassion that you aren't a threat to them. Now if they do call you back and their boss happens to be head of legal and knows everyone bosses bosses and are actually helping you, your feelings and complaint have been looked into and most likely your case flagged. In other words, if the hospital that spent over three years watching you die of something very easy to stop is suddenly  willing to make whatever doctors and nurses played and still play a libel role in your very valid claim of libel leading to defamation of character (which of course leads to all sorts of problems for the patient) sees the light (or darkness of whatever role they played)- it's time for the first round of sparkling cider. Tiffany is my friendly person in an unfriendly place.  I played by all the rules and watched not just policies being broken yet the very oath sworn by doctors as I was dying. I'm not close to 100% right now I have the beginning of  a migraine from stress and malnutrition yet at least I can rest. See, I know now that these people are going to be held accountable. How? Tiffany is just the beginning and most importantly my recorders will be amended and justice eventually served. I finally have some understanding of how all this works. And broadening my experience I understand why trust is so valuable in intelligence gaining- on both ends. Trust has been broken and it's time for it to be restored. Tiffany is going to make that possible for this hospital's ER at least yet what I know about the rest- trust cannot be restored by the internal medicine people. Which means war.. which means law suit.

Justice may require patience and she may be blind but that does not mean she cannot see.

Alley

Head is getting worse-- ugh.

Another Day

My stomach is really bothering me. Since I got hit with the stomach flu (or whatever its was) I have been feeling this odd pain in my stomach. I went to the hospital last week where the doctor, who had at one time assulted me ( two years ago) told me last week that I had free air in my bowel. My CT showed nothing while my X-Ray showed free fluid. The thing is that I told the doctor it felt like I had a parital obsutction not a ful obstuction and it was validated by the X-Ray yet not the CT. There is a really good explanation for this. I did not recieve the dye essential for someone who is as thin as I am (76% ideal weight) to be able to see anything diagnostic or otherwise on that CT scan. I know my body. For years I said I had a bad gallbladder. Finally I get so sick doctors were forced to do something about it. Goodness knows how much unnessessay radiation I endured hoping doctors would read these scans correctly in my area. All of this was in vain. Now I run into the same thing. Luckily despite the fact that the doctor at this hospital who had an X-Ray convirming that I had a partial obstruction told me so and I knew exactly what "free air" means. He never confirmed that I had a partial obstuction. He just asked me why I thought I had one. Simple answer: I have had dozens upon dozens. They are painful...nauseating and torurous until they pass. Bowel rest, fluids (usually IV) and a G-Tube (if vomitting continues) is the recommended treatment. I got a handful of discharge papers. I guess in some ways it's good to have had so many dang partial obstructions (and one full requiring major surgery at the age of 19) and that I have a dangerous eating disorder, anorexia, because I was able to not eat or drink more than 8oz of fluid. Now I am am weak. I haven't passed gas today yet I am not nauseated. This leads me to think that the obstruction is clearing. It would have cleared faster if  I would have been hospitalized. Not that I love doctors or nurses. In fact I was once going to be a doctor hence how I know when facts are being told do me as fictions or fiction is just given. I would probably be getting my undergraduate degree to become a doctor, a CT surgeon or immunologist/epidemiologist if it had not been for the two years of battery, harrassment and down right lies I had to endure as a patient. I wish, I wish I were 100% healthy. I wish I were like most, not having to go to a doctor but maybe once a year for their annual check. My ob/gyn has told me I am being too hard on myself. That "death was at my door nine months ago" and that I was being too hard on myself. I know that none of this was my fault and the fact that it could continue scares the hell out of me. I am sitting here at three thirty AM scared and almost in tears writing this blog. Why? Becuase I am starting to dream about what happened in those two years...four really. It's just...I do not know what to do with myself anymore. I feel totally derailed. The one thing I do I know: I will not be a doctor. Never. I will not ever chance becoming anything like those doctors those tens of dozens of doctors that hurt me in a way no person should ever be hurt. And it stays in me....and it reminds me of many aspects of my mother and childhood and while examining this I do not know how I remain alive. I am so scared of doctors...I am so scared of needles and nurses and people in scubs (even if they are vetrinarians). I was betrayed by the people, the staff of hospitals, who were meant to be on my side. In fact, they were never on my side. They took third party information that was false. That third party information came from my mother and this is how and why what those doctors did to me, said to me, implied and accused remind me of my mother.

I am crying now...I can't open this box anymore.

Alley

Friday Reflection

Before I moved in with my current fiancee I would talk to myself. I would work conflicting thoughts and feelings out by talking them out and hearing how irrational things were up there in my ego mind and come to come sort of resolution that would bring peace to me. The reason I stopped is simple: he can hear me. We live in a two bedroom however he and I are always home. He sleeps at night and I go to bed when the sun comes up. There is about 5 hours that we have together and awake though and I try my best to make those count. I feel guilty sometimes for not going out with him for not "charishing every moment we have" together. See the truth is my fiancee while he has beaten many odds has stage IV terminal cancer. It is incurable. There aren't too many types that are. He responded to Chemo however it left him with horrible pain. This is something I am very familiar with. He really wants me to just pretend all is ok. Actually to be more accurate he just wants us to keep living and I agree with this mindset completely. One must understand how hard this is though. It's unfair for me. I know he doesn't want pitty and I do not pity him yet at the same time I want to wake him up or have serious conversations with him or just play around (not sexually) or do something spontaneous yet my health isn't exactly stealthy. My psychiatrist says I am "definatly being tested." I am not religious by any means however I am highly spiritual and I would agree with this statement. First, I nearly die (and I am not out of the woods yet) and then when I get back from a 10 day stay on a medical/surgical ward my fiancee, Mitch, comes home while I am in the shower from the doctor.  I knew he was going however I guess I was so consumed with the BS from the hospital that I didn't take him into consideration. I remember when he told me. I was in the bathroom drying off when he said that he needed to tell me something. At first I thought it was just news so I told him to tell me then and there. He said it could wait until I was ready and changed I pressed. He said "I have cancer." I have never been so upset. My knees buckeled dead weight to the ground as he caught me to at least lessen the impact of the fall tears streamed down my face in uncontrolable rage. How could this be happening to this perfect man? Now he is not perfect. We are like an old married couple. Mitch is considerably older. This is his second time with cancer. The last type was curable. This cancer is nothing like the other. I keep hoping the doctors are wrong. What precipates me writing this when I should be getting rest myself is he just got a prescription for morphine. He hadn't needed to be on any pain medication before and now he does. This scares me because in my mind I am terrified that it's not becuase of the pain left from his vigorous chemotherapy that he needs it but because his cancer maybe spread and we just don't know it yet. Maybe it is causing this pain after all pain is a sign something is wrong. What if it's not neuropathy? I know a lot about medicine. Doctors are intimidated by me and often treat me disrespectfully in my own treatment because I am obviously knowledgable. I was younger than 10 years old when I started reading medical terminology. I was obsessed with being a doctor. At at 15 Stanford let me have the privilage, after explaining my motivations, to attend and watch many surgeries. My father never wanted me to be a doctor yet he didn't say "Don't be a doctor be a ____" He just said "You aren't going to be a doctor. You're going to be a writer." Now in my twenties I find myself repulsed by doctors and administrators, paper work and the government regulations that are often blamed (usually for no reason) for poor patient care.  I am glad that I have knowledge of medicine however I do not want to be a doctor. I find that if a friend or in this case Mitch needs my help they'll turn to me to help them better understand what the doctor was trying to convey. Sometimes we think doctors are speaking English or whatever our native language is and that they must be explaining it because one understands all that is said. They are not speaking the language we speak however and cannot help but fall into the saftey of the language of their trade. Even if that just means saying biposy. There are many considerations when thinking about biopsies especially lung biposies. We know this on an intellectual and intuitive level however that doesn't help us emotionally decern what is happening- what is being convered.  If you've ever been chonically ill or even if you have an unual presentation I am sure you'd remember a time when you thought to yourself "What??" And left with a feeling of "What was just conveyed by my doctor?" This is why it's important that one finds a doctor that they connect with and that the doctor connects with them. Mitch has that and I am so grateful for that. I do not. It drives Mitch crazy what the doctors put me through and he is so helpful. I feel selfish however this is what is happening with me. I am sick. I don't just have chronic pain and I don't have a chemical dependancy issue. I will admit I am dependent on narcotics yet I am followed very closely by a Pain Management Doctor who has said multiple times that he expects that my pain will breakthough my pain medication making the ER and IV narcotics the only other option.  I am not addicted to these medicines though. I just could not stop right away without withdrawl and that kind of major stress to my body would kill me. It took a long time for me to come to terms that I would probably need to be on these meds for a long time if not forever. My pain doctor says forever. I try to stay optimistic and say that we will one day sucessfully get me pain free without any medicine. I am jelous of Mitch. Not because he is brilliant, acticulate, focused, educated (highly)...I am jelouse because he is able to get his needs met quickly (well faster than me...in his case months at most. it took 9 years to get a diseased gall bladder out and about the same amount of time for an ob/gyn to diagnose me with endometriosis  that was so bad I had a complete hysterectomy...no uterus no overies and no kids). I get mad inside when he sees his doctor and he is mad over something small.  I mean, usually it's big just in comparison to what I endure it's nothing and it can be easily corrected and I tell him how. Mitch really values my insight and my ability to be objective, so he'll come to me with things his doctor said or ask me if I know of any type of medicine alternative or convention that will help such and such. My only stipulation is that anything I give him advice wise when it comes to health is that before he thinks of trying it to tell his doctor first. I haven't been there for Mitch and this is because I am dealing with a horrible depression. I have nightmares every night. Most of the time it's of doctors however a few times a week it's of my birth family.  i haven't been able to go to therapy with my new therapist for two weeks because my mother didn't give me a check. I am not a spoiled rich brat. The money and the things my mother pays for is shut up money. Guilt money whatever you want to call it. I need it however. Mitch can't work and neither can I. I collect government aide and Mitch claimed early retirement. We don't have enough to cover our rent...the one good thing is that Mitch and I spend a lot more time at home together which has aloud us to form a home. I didn't think that would ever be possible considering I live only 12 minutes away from where my mother lives. The house I grew up in and ultimately ran for life in. Instead of running away to the streets though I would hurt myself and make up elaborate stories that had nothing to do with mom's hurting me. I told the hospital I was being molested when I was 19 years old however my mother shut that down fast. The doctors weren't supposed to tell her. She never conserved me (I was not out of my mind enough to be conserved. I was self destructive...there's differenence...and I didn't even do, see or whatever half of what I said I did...the stories like seeing a rattlesnake in my car made them hold me longer so I wouldn't have to go back to my mother.). They did tell her what I had accused her of. The did not call adult protective services (which I didn't even know exisisted) and furthermore I knew I was being molested I just didn't know how to say it...other than say I was being molested. It was worse than that. It was also semi normal to me still.

OK I dont' want to open pandora's box of Alley's memories. Things are just hard. One great thing. It just started to rain and I can hear it as the sun is rising the rain is pouring. It's so soothing. Looking out my patio I can see the raindrops settle and drop off the trees...oh how I love the rain. Esspecially right now. I feel like crying execpt the sky is doing it for me and my tear ducts just won't shed any salty water so having the rain fall hard onto the ground and seeing it is as cathartic as a really good cry for me. Thank you Mother Nature. Thank you.

Alley

Eating Disorder Rapture

I fired this therapist recently. I know it was the right thing to  do yet somehow it feels as though I have failed. She was understanding- when she wanted to be. She listened- maybe 1/6th of the month. And she let me talk...actually she didn't do any of these things. My finacee is a lawyer and getting licensed to do exactly what he was born to do- ironically a therapist. My best friend who knows me really well even said fire this therapist. After three months of thinking about it I have.

I have a great psychiatrist who I met in the final treatment center and we now have been working together for many years. He thinks I should go to this other therapist. I would if my mother would help pay. There may be an off chance that she'll take my insurance- that would be a favor because of the relationship with my psychiatrist. This person is great with complex trauma. I am starting to wonder if anything or anyone is truly who they seem to be.

My current therapist tells me that she tells her interns not to take eating disordered clients. She took me. And now she complains about how uneasy she is about my eating disorder. This overwhelming concern just perpetuates the whole eating disorder problem. The other thing is my medical problems- past and current. My medical doctors do not know what to do. All I want is some understanding and compassion. I don't want people to just try to fix it (or me). I am not broken. If I had been the harrassment would have left me to commit suicide. I am talking about harassment from medical doctors mostly ER docs, Primary Care Physicians and of course anyone associated with them like internal medicine doctors on the floors (inpatient) who treated me or rather did not treat me. I have to fight for what will keep me alive with these people. I am 76% of my ideal weight because I have an eating disorder. It's also because I spent 9 years with a bad gallbladder that went untreated and undiagnosed until I went out of state to get medical care. I was on artificial nutrition and not able to eat. You have no idea how powerless one may feels to have to get home care...to get an infection in your blood and go back into the hospital for vancomyacin and to go back home for days of more antibiotic. All due to the fact that my gallbladder was acting up so bad that I had to have a line in my arm (called a PICC line). This had nothing to do with my eating disorder yet now that it is behind me (though not fully recovered) it is difficult. I have lived through so much and I want to be treated with respect for once. In my opinion and knowing myself, I wouldn't have relapsed with my eating disorder if it hadn't been for the gallbladder disease.

Prior to the gallbladder disease I had to endure a hysterectomy so I am in menopause as well.

There is just so much. I am scared to eat because I don't want to vomit. I don't want to be in pain. Last Thursday I had 48 hours of normal eating then I got the stomach flu. I am being tested or so it would seem and I am tired of it. I feel like I have fallen and of little fault of my own..if any fault at all.

Alley

Happy Thanksgiving!

I know that it can be hard for a lot of people on Thanksgiving. I would have had a really tough time if it wouldn't have been for my fiancee and his two friends on the east coast. How I love them! Of course I couldn't get a hold of my biological family and my best friend who is like a sister to me is depressed and not up for Thanksgiving dinner however I am well. I have good people in my life for the first time ever and for that I am grateful. I am getting closer to doing what I want to do with my life and for that I am grateful. There may be a lot of crap (like my father not being here RIP Dad) yet there is also a lot of good. It's hard to stay in mindset of gratuity when I feel sick however it's because I  feel sick that I can be so grateful of things we may take for granted. I have a new family. They aren't perfect yet neither am I.

Happy Thanksgiving all.

Alley

Sunshine and Frost

This morning I awoke to frost on my car. This may seem like no big deal however when you are on your way to the ER and your heart is pounding and you don't have an ice scraper it's kind of annoying. I was treated terribly upon discharge of the hospital. In all honesty, I should not have been discharged. Unfortunately the hospital labled me wrongfully as a drug dependent/seeker. This label started 10 years ago- more now- when I was still a minor. When I still thought that being touched in sensitive areas by your own mother was normal. I was 22 when I started to understand mommy shouldn't be touching me in my feminine areas. I lost my virginity to her. My mother is an alcoholic. My sibling and I will not even drink socially because it reminds us of our mother. I got labeled a drug addict at age 15 when I abused with heroin as my mother says. That is not the case. I had been hurt by her and was given vicodin that my mother found and took before I could even take it. I couldn't go to the doctor because my mother would have known (she payed all my bills until age 23- she still pays some). My mother never wanted me to go to the doctor unless she was there. I couldn't even cross the street without her. I couldn't even sleep alone until I was 13 and my dad said I MUST have my own bed. So many bad things happened in that bed. I never thought that I was scared. Fear was something that felt so normal that I didn't give a second thought to it. I just tried to survive her beatings, molestation and well other very bad things. So long story short my mother went to the ER with me or would call them and she, as third party information, would tell them that she was so worried about me using drugs. This led to doctors writing about it. Even though I never "failed" a toxicology screening, I was a drug addict because I bought vicodin when I was 15. My mother changed the story and I went along with her after a number of years because the punishment was far worse. Now, I am very sick and sometimes so in so much physical pain that I cannot push through and I cannot even stand. I can't talk. I can't breath because my stomach may hurt. However being labeled a drug addict or med seeker has hindered my care in ways I won't describe because well it's just too much. I tried writing out one visit to the ER where I was treated so poorly and I had flashbacks and nightmares for maybe a week or more. I'm learning how to cover my tush much better now though. So where is the sunshine? I can breath without pain. Where is the frost? My discharge papers said I was a drug addict again. If there was something like Anorexia Nervosa there I would feel embarassed and maybe angry at myself for allowing them to figure out my secret death warrent. It says a lie though. I am fighting for my life. And all of this because of my mother. I caannot share anymore. I wish all well.

Alley