I really hate holidays. No, that’s not entirely true. I actually love holidays. But holidays are meant for spending with friends and family. My family is not close emotionally, and my Mom is hours away. My friends are either married with young kids or hours away. And Shane is locked up. And so, I am alone for the holidays yet again. This should be such a happy holiday; I should be outdoors, enjoying the beginning of summer. But I’m not. I’m alone, again. Thank god I have to work the whole weekend or I would have gone crazy.

The new hair hasn’t started to grow yet. The existing hair is growing, very slowly. I’m so tired of looking in the mirror and seeing a strange looking mohawk on my head. I tried to Shane that I was depressed about it, but how can he possibly understand? He’s a male with a full head of hair. He tells me that I am still beautiful, but I don’t see it. I don’t feel it.  

I’m so tired of not having hair on my head I’m ready to go into a salon and ask for the hair that somebody else has had cut off and glue it to my head! It is growing so pathetically slow! The new stuff hasn’t started to grow in at all yet. From the front, I look like I have a mohawk. This was so much easier for me right after I got it cut off. Then I was still so sick of it falling out that I was happy it was gone. Now I’d do anything just to have a few inches left. I like my hats and everything, but they get to be boring. I was the kind of person who was always playing with my hair. I wish the wig would have worked out better for me, but it was just too itchy. And I hated it because it was fake. I’m taking vitamins to help it grow, but obviously that isn’t going anywhere. And I just looked it up on the net…..on the average, hair grows at the rate of 6 inches a year.

It’s gonna be a long year…….

Ok, first let me apologize for not updating everyone sooner. My head is in a fog, and I’m feeling lost.

Radiation has been over for one week now. I’m so glad that is done and over with. Now I’m just frustrated that my hair is not growing back fast enough. Doesn’t hair normally grow about 1 inch per month? The stuff I had cut really short is just not moving fast enough for me! And I’ve all but given up on the wig. I felt fake wearing it; it was hot, tight, and awkward. I think I’ll stick to my cute little hats I’ve been making.

As for the “fog”, I have this problem with only being able to handle one big event in my life at a time, and I can’t see or even think about anything past that. This event was HUGE obviously, and now that it has passed, I’m having a hard time getting my head back on straight as to what to focus on next.

Shane & I got back together, all fences mended. We had a lot of long talks and worked out all of our issues. I feel a lot better about how things with us. I have a better idea of his plans for after he is home.

So now I’ve got him coming home in 101 days now. (YEAH!) I need to have a garage sale before then, not to mention work on cleaning and organizing the house (I’m a lousy housekeeper!). Especially my bedroom, I never seem to have enough room for stuff in there. Closet space especially. I’ve been working on getting rid of clothes, sending stuff off to garage sale. Slowly. So I guess the garage sale and re-organization of my house is my next priority. Does anybody else ever have this problem? Only being able to deal with one thing in life at a time? Any suggestions?

Well, that is all for now. Just trying to get a grip on life again.

Caryn

So much has happened since my last update! My head has now been shaved and I have my new wig. The head shave was prompted by several things: enormous amounts of hair falling out everywhere, all the time; my head itching and at times, smelling of “scorched” hair; my wig would fit better over it; and it will just be easier when the new stuff starts to grow in to integrate it all. The loss of all my hair is a shock, but I am taking it very well I think. I know it is inevitable and just something that needed to be done. I have to keep a positive outlook on everything right now in order to get through this.

I’m currently at the end of week 4 (of 6 weeks). I am getting tired a lot more lately, not to mention more headaches and a bit of dizziness from time to time.

As for my boyfriend, I have broken the bad news to him. He is not taking it well, not as in breaking down and crying but trying to change my mind. I have to admit, there are things he is starting to sway me on, but I feel the need to stand strong for myself. We still have so much to discuss, as I have ALL of his things, including 2 cars, clothes, tools, etc. His previous girlfriend, Bonnie, promised shoe would hold all of his stuff till he was out and she sold 97% of it, just leaving him 3 small boxes of miscellaneous clothes, tapes, etc. Thousands of dollars in cars, tools, clothing, Cd’s, electronics-all gone forever. And he is holding what she did against me, saying that he does not know if he can trust me or not, that I may do the same thing that she did. My response to this was that I don’t like to see anyone screwed over, that is his stuff and it will be here, safe, when he gets out. He has not made up his mind whether or not to trust me yet. But yet he says he will keep his promise of us always remaining friends, no matter what. My response back to him? That if I am his friend, I would not do that.

I even gave the phone to my good friend and roommate, thinking that she could give him her third party viewpoint on what she sees going on. She has talked to him also on numerous occasions and has also gotten frustrated at how controlling and manipulative he seemed. She spoke with him for ½ an hour and was clearly frustrated with him at the end.

So right now we are discussing all the things that he does now or has done that make me angry, or have caused me to lose trust in him. Trust is such a big factor, and I have very little trust in him anymore. Too many times has been deceitful or flat out lied to me on things. I guess that will be the main point of discussion in the morning round of talks.

Thanks to everyone for their support, especially Karrie (aka Kezcat).

Will update with more soon.

Caryn

Well, my hair started falling out this week BIG TIME. Oh well, I knew this was going to happen, but knowing it doesn’t make it any easier. Every time I turn around, I’m pulling huge handfuls of hair out. I have a big bald spot on the left side of my head. Right side has hardly lost anything. I guess it is supposed to be in spots all over my head. Anyway, I’ll be needing a hat soon and a wig in a week or so. One good thing did happen. I found out yesterday that I can get a wig for free through a charitable organization at the hospital. I’m going to get fitted and pick it all out today. I hope it doesn’t take too long to get here. I am actually excited about it…..well, kind of. The way an amputee is excited about getting a prosthesis.

Anyway, I’m going to go bright red. My hair is now a washed out red, and I’m always dying it brighter. As soon as I know when it will be here, I will go and get the rest of my hair cut off. I have to in order for it to fit under the wig anyway. Frustrating, it was getting so nice and long after the last time I had radiation. Now I have to cut it again.

No one around me (exceept my roommate) realizes how hard this is on me. I love my long hair, I ‘ve always had it long and planned to have it that way till the day I die. And now I have to have it cut. I’m going to have a serious breakdown when they cut it. I’m taking my roommate with me, as she is the only one close enough who will be able to give me the support that I need.

All for now. Hangin’ in there, barely.

Caryn

I went to a website that a friend had recommended about interpreting dreams. This is the highlights of what I came up with, and boy, did it really hit close to home.

Wedding   To see a wedding in your dream, symbolizes a new beginning or transition in your current life.  Dreams involving weddings are generally negative and highlight some anxiety or fear. It often refers to feelings of bitterness, sorrow, or death.  Alternatively, wedding dreams reflect your issues about commitment and independence.  (Bitterness towards Shane about how he wants our relationship to work; I am too independent for his beliefs.)

To dream that you are planning your own wedding to someone you never met, is a metaphor symbolizing the union of your masculine and feminine side. It represents a transitional phase where you are seeking some sort of balance between your aggressive side and emotional side.

Marriage   To see a marriage in your dream, signifies commitment, harmony or transition (mine must be transition). You will undergo an important developmental transitional phase.  It may also represent the unification of formerly separate or opposite aspects of yourself.  In particular, it may represent  the union of masculine or feminine aspects of yourself.  (I have problems with my male side being overly dominant and am struggling now with making them equal).

Celebrities   To dream that you are good friends with a celebrity, represents your idealized version of someone you know in your life.  Perhaps you hope that a real-life friend can act more like a particular celebrity. Consider the qualities that you see in this celebrity and how you want your friends to have those qualities. (Arnold is a good, strong, successful person whom is liked by many. Not a lot of people get along with Shane).

Black wedding    . This seems to indicate that upon hindsight, what you thought was a good and positive thing was really a bad/negative idea. Perhaps you had recently found out what something that was contrary to what you initially thought. Consider also how you may be rejecting an idea which you accepted at first. (I’m guessing this is referring to me marrying him, I did think it was a good idea and now I am reconsidering it because he does not have personality traits that I need, including being trustworthy, good-hearted, and successful).

 So that is the interpretation. Really hit home once I got all the information. Now, I’ve done dream ananlysis before and it made no sense. Parts of my dreams didn’t have “catagories” to fit in.

Just more food for thought for me.

Okay, so here is an INCREDIBLY BIZARRE dream that I had today while asleep (I work 3rd shift). Ya’all have to help me figure this out! Here goes:

First weird thing: I’m living at my grandparents farmhouse, not my current apartment. I haven’t been to the house in years but I love that house.

Here’s the really weird part: I’m getting married. But not to my boyfriend. To Arnold Schwarzenegger. (Don’t ask me where Maria is, I don’t know).

Third weird thing: I didn’t buy a dress for the wedding. So the day of the wedding I am going frantically though my closet trying to find something to wear suitable for my own wedding. THEN, I remember the dress that I had bought from when my boyfriend and I were supposed to get married (which was at the courthouse just before he was moved to reception). Only, when I dig the dress out of the box it’s in, I had colored it BLACK with a MAJIC MARKER! I realize I did this because I had given up on him never marrying me anyway.

I don’t remember much after that, except that I was freaking out about the fact that Arnold had invited ALL of his celebrity friends to the wedding, which was going to be there on the farm. (Yeah, right!) What the hell was I thinking not buying a wedding dress??????

Then I woke up.

(Oh yeah, Arnold has never been my “fanatasy man” and not only that, he is like twice my age. Also, I’d never move to California, can’t handle the earthquakes. He’d have to move here to Wisconsin I doubt he’d give up being Congressman just for me!)

Well, in case I haven’t mentioned it before, my boyfriend is in prison. He has been very un-supportive lately, blaming it on the fact that he is 4 months from getting out and it puts him in a highly strung bad mood. Said that everyone there is just really starting to get on his nerves and he is not handling it good.

Okay, stop and think here, just for a moment: Which one of the two of us is having a worse life right at the moment? Me or him? I think I win hands down with 13 brain tumors, and 6 weeks of radiation treatments, don’t you? He has been through “the home stretch” of getting out of prison FOUR times now. This should all be old news to him by now. He should be used to this.

Besides, isn’t the point of being in a relationship to support one another through bad times? And have I not been with him through all 3 ½ years now? Including four times in the hole where he was a really demanding person to deal with??? But yet it is too much for him to stop and think of me, to give me some considerate words a day. Just to call and say “I love you” and “how are you feeling?” Well, according to him, he just can’t deal with that right now.

I’m getting to my ropes end. Relationships are 50/50, nothing more, nothing less. And if you are locked up due to your own stupidity, and all you can manage is emotional support, than you’d DAMN WELL BETTER BE GIVING 100% OF WHAT YOU CAN GIVE!!!!!!!

He’s getting a copy of this.Will update you with what he says when I get a response.

Well, I had that meeting with my boss’s boss & the lady from Human Resources. My boss was unable to be there cause he leaves earlier and couldn’t hang around for it. I wish he could of, I could have used some emotional support on my side. My boss is relatively cool. So the meeting went ok. They just went over the summary of the medical test I had given them. This all happened Wednesday morning, and I had off until Thursday night. When I come in, there is an e-mail from  the HR person summarizing our meeting and asking questions. From the questions she asked, she CLEARLY  does not understand. I have TWO problems, one is depression/anxiety and the other is undergoing radiation. So I sent her back a detailed e-mail trying to make her understand this. The depression/anxiety, while made worse by the radiation, has been going on for over 3 years now, just getting worse over the past 6-9 months. She wanted me to give her a date as to when all of this would be done with. Ok, depression is a roller coaster, and mine has been more down’s than up’s. I can’t GIVE her a date as to when all of this will be over! I wish I could! I would jump for joy!

I told her that all I was really trying to accomplish by giving HR that test is a little more understanding from my bosses as to why my work is not up to the quality & quantity that it should be. And for some more trainging that does not involve putting a disk into a computer and following along, I need something more human than that.

Actually, my main point in all of this was preventing me from getting fired! When they have that medical information, they cannot fire me, and if they move me to a different position, they cannot cut my pay. But I couldn’t really come right out and say that! So as far as what happens from here, I don’t know. I won’t be able to update the blog as much, because as of now, I only have computer access here at work or if I go to the library. But I will update as much as possible.

Put some feedback on here, no one ever gives me feedback and it makes me feel lonely!

Stressed out-anxiety attack big time! I’m to have a meeting in the morning with the Human Resources dept and my boss’s boss. We are going to discuss ways of changing my job to make it easier for me to work given my “disability” (depression). See, I had given HR a copy of the diagnostic test I had taken that stated, among other things, that I had a problem doing problem-solving type things. Basically, anything that is “left-brained”. Problem is, my whole job is left-brained. So I have no idea what is going to happen at this meeting in the morning. I’ve been told (by a reliable source) that they cannot fire me, or decrease my pay due to my disability.

Few problems here:

First of all, I need these hours I am currently working in order to do the Radiation treatments and get enough sleep that my body will require during it. 

Second, if they move me to a different area, then that is more stress adjusting to a new job, new people=more anxiety.

Third, taking me off third shift makes me lose the $1.50 per hour premium that I get for working graveyard. That’s a massive pay cut. Less money=more anxiety, more stress=more time off. That’s bad for everyone.

I’m not looking forward to this meeting. I’ve already more than maxed out on my anti-anxiety med’s. Have to or I’m going to be a basket case during the meeting. That will look real good: have a major breakdown right in front of your bosses boss. I’m afraid they are just going to tell me to take time off work and go back to short-term disability. Then I’ll have to find someway of making cash under-the-table, or something.

Or hit the rifch-bitch of a father up with a massive guilt trip and make him give me money. Naw, too tight-fisted.

3-29-05

Well, I now have completed my 2nd day of radiation (out of 30 days). My brain feels like it’s been fried in a microwave oven afterward! And after doing a little research, I found out why: the type of treatment I am undergoing is called Tomography. It is a 2 step process in which they take a CAT scan each and every time. Then after studying the scan, then they give me the radiation. The radiation I underwent last time was called Lineac, and it only involves radiation being pointed through 6 beams at the tumors. With Tomography, it uses 72 rays of radiation directed at the same tumor. From what I read, it is supposed to damage less of the surrounding tissue and is used on hard to reach tumors. So while all of this makes me feel more confident about what is happening, I still feel awful afterwards and need to go home and sleep off the affects. I am hoping that this will make the hair loss more spread out instead of mainly concentrated in one area. I really hate bald spots! (Reading this, I sound so trivial, worrying about my hair. But I worked really hard on getting it this long and don’t feel like losing it now!)

I ordered more vitamins, this time vitamins C & A. I came across research that said taking high doses of these can cause tumors to shrink. And if it doesn’t work, well then at least I am healthier than I was before. There are still a few other ones I need to get, but they are all more expensive ones, including AHCC mushroom extract and ellagic acid (which comes from the seeds in raspberries). Both are also known to shrink tumors. There were a few other things, like carrot juice and a diet of all raw fruits and vegetables. Carrot juice I can see, but not a raw food diet! Where would I be without cheeseburgers and Taco Bell????

Anxiety attacks are still bad. I am at max dosage for them just about every day. Depression is still a rollercoaster. Hopefully this new med, Lamictal, will help “even out my moods” and I can go off one of my other med’s. I have a total of 5 right now, 4 I take on a daily basis. And this doesn’t include the handful of vitamins. I just keep telling myself that it all has to help, somehow, have faith.

Well, that is all for now. And where are all the comments? Is there anybody out there reading this???? Hellllooooooo!

Caryn

Start of radiation is just 5 days away. I’m going to see my Mom & stepdad this weekend. Not for emotional support, because we aren’t that close. It is my stepdad’s 50th birthday on Easter and I’m making him a special birthday cake. It’s a “Redneck Birthday Cake” which is 4 6 packs of beer with candles stuck in between the cans. It will be good to see the look on his face, to bring some joy to someone’s life even if there isn’t any in mine. So this trip is really just to help get my mind off upcoming radiaton.

I know I’m going to loose hair, it is standard with radiation. Especially in the area that they treat, which will be the left top front from center back to my ear.  More than likely, I’m going to loose hair in a way that can’t be covered up by a new hairstyle. Which leaves me 3 choices: shave my head (not a chance in hell), wear a hat till it grows out, or cut it short and wear a wig. I guess that is what it is going to be. It is ripping my heart out at the thought of cutting my hair, which is just a few inches short of my waist and pretty red. I’ve always loved my hair and have been working so hard to get it this long. My boyfriend says he’ll love me anhyway, but  it still hurts. I’ve never felt like I was a beautiful person, other than my hair. I get so many compliments on how pretty it is, on how people wish they could have hair like mine. And now I’ll have nothing. I know this seems petty to some, but it is the only thing that has ever made me feel beautiful. I’m glad my hair stylist is a friend, cuz’ I’m gonna have one hell of a nervous breakdown when she cuts it.

When I was in the hospital, I took a nuerological-psychological test to determin if the problems I was having at work were due to something in my brain or due to depression. The results came back that I have a definite problem with memory and problem solving. They believe it is due to depression and won’t be resolved until depression is relieved. So this seriously affects my job because it is highly technical problem solving. I’ve already been reprimanded twice now for my lack of performance. I’m working on getting a copy of this letter over to the human resources department. With that in their hands, they cannot fire me. They can relocate me to a new, more suitable position, but they cannot cut my rate of pay. That is somewhat reassuring. But I’ve grown to like aspects of my job and my co-workers, Changing now would be highly stressful on me. We shall see what happens.

That is all for now. Will update as I am able to. Wish me luck.

Caryn

Depression has been almost overwhelming the past 3 days. On a scale of +5 to -5, I was a -4. I’m not suicidal, but I think about it, dream about it. There is just too much going on in life for me to handle right now. And I feel like a failure because it seems like I should be able to handle it, but I just can’t. It takes me 4 anti-anxiety pills just to get through one night at work. That is the maximum daily dose for me. My doctor was not happy with that, so he added another drug, this one being a mood stabilizer, and is hoping to be able to take me off one or tow of the others in a few months after my mood stabilizes.

He got the results of the test I was given while in the psych ward. He skimmed over it on our visit, reading small bits and pieces. And then he tossed it aside, like it was meaningless to him. Obviously it was meaningful to the doc’s at the hospital or they would not have requested me to take it. So I called him back and said I wanted a complete, in depth analysis of the test and what it means. He went over it on the phone to me this time, a little more thoroughly. Basically they determined that I do have an attention, concentration, and problem solving ability lower than what it should be. They feel that this is caused by the depression & anxiety and will go away when that does. What if it never does? What if it causes me to loose my job? What then? Cuz’ I can tell you right now, if I lose my job, I’m driving straight from here and checking myself into the psych ward even if it means having to attempt suicide out in front of the hospital to get in. I’ve never been without a job before, and don’t know how in the world I would survive. I’m just not that strong.

And as for my boyfriend, I called him today when I was really depressed and mentioned that I felt my life was meaningless and I’d be better off dead. He said “I don’t want to hear that sh*t and if you don’t stop it, I’m gonna hang up. Well, now I know who the LAST person that I’ll be calling if I need someone to talk me out of suicide. That did not make him look very good in my eyes. I was counting on him for a few reassuring words, instead I got nothing.

Don’t know what is going to happen from here. I want to try going back to school. I figure the fact of my brain tumors, depression & anxiety should help me to get a grant and maybe I could go full time. Hey, I was cursed with all of this, I might as well benefit from it if at all possible. I do know this: the psych ward is looking better and better every day. It was nice there; out here is hell.

Signing off for now.

Caryn

Radiation is getting closer. I am working on preparing myself: emotionally, physically, and spiritually. Emotionally by talking about it with friends, family, and doctors. Physically, I just spent $40 bucks on vitamins and have another $40 on order at the vitamin store. All are geared at toward boosting my immune system and (hopefully) preventing me from loosing too much hair. (Hey, it’s worth a shot!).

Spiritually, I have started collecting things to help keep me strong, sort of like good luck sharms, only in a much broader sense. I have my two healing crystals, one is citrine the other is amethyst. I have the bracelet my boyfriend gave me, which is native and has been prayed for and blessed just for me. I have a charm bracelet which I am adding charmas to that are lucky in one form or another. It is slow going finding the right ones, plus I don’t want to spend too much money. I just bought the first of them, it is a humming bird, which my grandma, who is now passed, loved very much. I am looking for a four leaf clover one (it has to be special-I’ll know it when I see it), a horse shoe (upright to hold luck in), an elephant with his trunk up, the chinese symbols for health, luck and happiness. And a medicine wheel if I can find one. Otherwise, I’ll have to find something else for my boyfriend, who is native. I’m also looking for a cross, a prayer or wish box, and a siamese cat. And maybe a medical symbol, for the doctors who are treating me. If anyone reading this has suggestions of something that means luck or good health in your culture, please let me know and I will find one and add it to my bracelet.

So that is all that is going on in my life right now. Just focusing on being as ready for the radiation as I can be. Trying to stay as positive as can be and take things one at a time, not focusing on “the big, bad, future”. I have faith in my doctors and the medicine, and that is a plus.

So stay tuned, for the next episode, of the drama in my life. Will be aired soon.

Caryn

Other than that, things aren’t too bad. I’m still getting anxiety attacks, especially at work. Depression seems to be getting better, but there are times where I have episodes of feeling low. It’s hard to get out of the funk once your in it. But I’ve been having more up days lately.

Getting emotionally and physically ready for radiation treatments at the end of this month. Physically by taking more vitamins and making sure to take them on a regular basis. Need to boost my immune system to help my body get through this. Also trying to make as little hair fall out as possible. Wish me luck on that one! That is like fighting a losing battle.

One positve theing I’ve noticed since my release from the hospital: I am much more motivated in doing things. Whether it is cleaning, or craft projects around the house, or getting finances straight, I’m working on it. It is all very slow going, with the exception of the craft projects! But at least I am feeling more positive about things. My new roommate & I just need time to both get on our feet financially. For me, that should just be another month or two. Plus I’ve started a savings about, where $50 each month from her rent gets deposited. My little nest egg! Now as long as I don’t crack the darn thing, fry it up, and eat it for breakfast, I’ll be just fine. In other words, HANDS OFF IT, GIRL!

Well, that is all for now. I will update again soon.

Y’all come back now, ya’hear?

Hello Everyone! I apologize for the length of time since my last update. Contact with the internet has been hard for me to come by. So here's the update:

I was released from the psych ward Monday(2-23) late afternoon after doing a nuerological/psychological test to determine if the symptoms I have been complaining of are nuero or psych. Results of that test will take a while. I am off work in the meantime, by order of my psychiatrist, whom my reg doc and nuerologist are all in agreement with. So I am still being paid, but not as much.

At the moment, I am at a friends house in Illinois. These are very, very good friends. Actually, they are my "adopted" parents; I adopted them and they adopted me. They are both active in holistic medicine and have been helping me greatly. I cannot put into words how much help and how much I love them both (Thank you, E & E) I have a new outlook on things in my life right now. I have realized that I have been trying to help everyone around me and have been giving them my time, energy and even money. That is going to come to a stop. I am going to start to focus on ME. What is best for me, what makes me happy, what makes me healthy. My boyfriend is going to have a hard time dealing with this, but if he loves me, he will accept. If not, I show him the door. It will hurt, because I love him, but he is hard-headed, stubborn, demanding, and controlling. And I don't have time for it right now. My health and my happiness must come first. I just simply have to stop "saving" all the poor lost souls around me. They must fend for themselves from now on. Things are going to change. They must.

As for the tumors, I had a CAT scan done on Wednesday. We also made the hard mask for the upcoming radiation. For those of you unfamiliar with that, I actually got a picture of it and hope to someday get it scanned in and here on my site. And something else I am REALLY excited about: I requested copies of my MRI and my CAT scan. The techs & docs were suprised, apparently I am the first to have ever asked for this. With any luck, someday soon they will be here on my site too!

I also saw my doctor, my radiologist. (Oops, this was before the CAT scan.) He gave me the choice to make: either radiation now or watch and wait. He also gave me the news that radiation can CAUSE more tumors to happen in the future. (It is also possible that I may never get another one ever again.) I was not aware of this. But I made the chice to radiation now and deal with whatever happens in the future. After all, they are making huge strides in medicine and learning more and more every day.

I got a call earlier this week from the radiologist's office. He said that my "plan" is a little more complex than they though and was going to take longer to map out where to radiate. So I had thought radiation was a week to a week and a half away, it is now 1 month: March 28. I don't like hearing that the "plan" for my head is complex. That definitely worries me. But I must leave worries aside and put myself in the capable hands of my doctor (and the team of doctor's who study every minute detail of what is being done). What will happen will happen and it is out of my control. Just be strong and hope for the best, right? And keep praying for me, I appreciate knowing that you all are out there doing so.

That is all for now. Keep the comments coming. And thanks for caring.

Love & peace to all,

Caryn

Hello Everyone:

I am writing to you from the psychiatric ward at my local hospital. I voluntarily put my self there, in fact, I begged to be admitted. Not all I expected, everything here moves slow. I guess I am just of the mentatlity of "Let's make the most of the time while I am here and get done as much as possible". Unfortunately, the doc's just aren't seeing it that way.

I have new med's, including Serequil and Celexa. Still on Clonazapam. A little more tired than usual on the new med's, but that is to be expected. I would rather be going through that portion of it in here rather than out there, while trying to deal with work and all too.

I don't know when I will be returning to work. I'm very confused on that. So is my boss, cause it is such a big company and the payroll dept has to keep all this info hush-hush and confidential. But my boss is a good guy, and he is interested in what is best for me, but they still will not share this info with him. Oh well, can''t fight the system, I guess.

Anxiety is still there. Mind is racing, get adjetated easily by some of the strange wackos in here. So hard to get away from them, they seem to be everywhere. I can always go hide in my room, but that just makes me sad and want to dry.

Well, just wanted to update you all. I know you've been worried cause I haven't been around much. This is why, I've been here since Wednesday 5pm.

Gotta go. Peace and happiness to all, even if I can't seem to find it.    ---Caryn

PS: Where are all the comments? I want comments from all of you, damn it!

Well, due to miscommunications between the payroll dept and my psychiatrist, I am back to work. I'm just keeping lots of anti-anxiety medication on hand. Now the quest has begun to get the questions answered by my doctors. If ZI can get the questions answered, then anxiety should go down and I should be feeling more positive.

MRI is scheduled 1 week from today. Mapping of the brain will take another week or two and radiation will start after that.

Thanks to everyone for listening.

Can't talk long. Working now on getting onto short term disability fromwork. Had a MASSIVE emotional breakdown the other day. So hopefully I will have some time off to get my brain in order, so to speak.

Love to all.

Caryn

Journal: 2-8-05

I’m ok at the moment. Going to contact my doctor today to find out where the tumors are located exactly. At least he can tell me that. He may not be willing to tell me what types of symptoms being where they are located may cause, but I can find that out. Anything is possible on the net. I need to know what to expect. Who knows, maybe he will want to know about these possible side affects, maybe he will research them. Maybe I am underestimating him. I just know in the past, he hasn’t been willing to communicate with me.

Shane’s been doing a lot better. There have been several tiems where he’s been incredibly sweet. I really needed that. Sometimes, I ask him this goofy question: I look him in the eyes really funny and say “Shane? Are you still in there?” I mean of course, the sweet, loving , romantic guy that I fell in love with that being in prison forces him to hide. He always laughs and tells me “Yeah, I’m in here somewhere”.

My boss is on my case about work productivity. Not my fault that there aren’t always enough alarms to work. And when some do pop up, my other co-workers hog them. But here again, the side affects of the tumors concern me, be cause I do have trouble comprehending the technical aspect of how to fix things. And concentrating on anything for any amount of time. At first, my doc’s thought it was adult ADD, but I had none of the symptoms of it as a child, so that ruled that out. Maybe what we thought was ADD is really the tumors putting pressure in the wrong spots.

Anxiety attacks still rampant. Taking med’s for it 3 times a day. I hate the feeling of wanting to curl up into a ball and cry, hide away from the rest of the world, and make my heart stop hurting. My mind races-over all of it, everything, all at once. Feeling depressed, scared, and alone. It’s not as if there aren’t people in my life I can talk to, but there is no one physically close enough to me, physically and emotionally, that I can rely on. I’ve had times, out in public, when I see someone and would just love to be able to walk up to them and be able to ask, “Excuse me, will you be my friend? Can I talk to you and cry on your shoulder?” But I would feel ridiculously stupid doing that. So for now, I am alone.

There are so many emotions swirling around in my head right now, it’s no wonder I get headaches. These tumors are growing again and I don’t know if they are causing problems or if it is just laziness, depression, anxiety, and unhappiness with my life situation right now. If it were just laziness, that’s one thing.

But what if it is the tumors? What if this doesn’t go away? What if this gets worse? What if this I loose my job because of the side affects are causing me to do my job badly? What if my doctor won’t acknowledge that “his” tumors are causing it? What happens to me then? No income, no health insurance, no prospects of getting a decent job. You might as well put me into the psych ward, cause that’s exactly what would happen: extreme nervous breakdown. We’re talking the curled up in a ball, rocking back and forth, humming to myself, not speaking to anyone, staring off into space kind of breakdown. I can barely handle things the way they are going now, god forbid if they get any worse.

And damn Shane (boyfriend)  to hell for not being more supportive! It is the one and only thing that I ask of him is emotional support, and instead, he tells me “not to think about it”. As if that is going to make it all go away or something? I’ve done so much for him during his time locked up, and I need him so much right now. I don’t know if he’s scared, or selfish, or doesn’t care. If he’s scared, I wish he’d just talk to me about it, cause I’m scared too. He is the only one in this world I can share my feelings with, yet he’s locked the door to his heart & mind and won’t let me in. I need him now more than ever and he is not here for me. I understand he can’t be emotionally (that is a different anger issue altogether, but I’ve dealt with that) but he can be here for me emotionally and he won’t. Personally I think the thing about “not being able to allow himself to share emotions while locked up” is just a cop-out. I was there for him when he needed me most, where is he when I need him?

The anxiety attacks are getting worse. A lot worse. Pain in my chest like my heart is breaking into a million pieces. Stomach twisted into knots. I have to stop myself from crying. I can’t cry, I’m at work. I don’t want to talk to my co-workers about all of this. They’ll think I’m a freak. Then they’ll look at me and pity me. Next thing you know, it will get to John and I’ll lose my job cause I’m not competent enough to handle it anymore. And who knows? I may not be competent enough, but it’s not really my fault. It’s these damn tumors. Or is it? Who knows? Every day tasks, cleaning, bills, I can’t concentrate on these things anymore. Bills are behind, credit cards maxed out, I’m doing payday loans every month just to stay ahead of things. I guess I’m just not very good at stress management. But who would, given this kind of stress? I’m glad Terrie is moving in, but I don’t want her to feel like she is my maid and caregiver, cause she’s not. She’s my friend. And I need my friends close to me right now. I can’t do this alone.

I’m so lost. I don’t know who to talk to about my problems anymore. I can only see the counselor twice a month, and then there is the psychiatrist, docs Dempsey & Mehta, Shane, Doc Lozo. Everybody points the finger at somebody else and nobody is helping. What I wouldn’t give just to have the nervous breakdown and let someone else take control of things for a while. It’s coming, I can feel it, the breakdown is somewhere up ahead in my future. And there is nothing I can do to stop it. Hell, I don’t know if I want to stop it. Maybe they’ll give me enough drugs that I won’t feel this pain in my chest that is my heart breaking.

I don’t want to kill myself. That’s too messy. I just don’t want to live anymore. Not this life anyway. But then, I guess I don’t have much of a choice. Even if I run away, these tumors still come with me. I’m not strong enough to take all of this on all at once. I don’t know how I did it the first time around. Somehow I was stronger then. I guess all those times of Shane breaking my heart has made me weak. Who knows, maybe that is just a cop-out. But I know it certainly didn’t help things. I just wish he could admit it; face up to his mistakes and honestly apologize. But I’ve heard his apologies; they are not from the heart. He believes he’s done nothing wrong, wronged no one but himself.

Do I have “Up moments”? Yes, but they are rare. On my scale of -5 to +5, they are about a 1 or a 2. Sometimes with Shane, or with Peggy & the boys (friends), but usually with Romeo (cat). He’s my guardian angel, my one and only piece of heaven that I can always count on. But alas, even these are rare for me. Short moments in time that break the monotony that is my life.

Found this quote from someone on the internet. (Describes my feelings of depression)

“To put it bluntly, it’s everything that you aren't. It’s a blackness that consumes your heart and your mind and the very depths of your soul even in the sunniest of days. It’s never ending. It takes everything in your power to try to end up on top, and when you do it’s as if you just end up down in the dirt later on. Why try? Why care? Its blame at its very essence. It’s the lack of everything, and anything. Even if you’re surrounded by people you still KNOW that you have no one. It’s haunting."

Chapter 8: Growing Again

I had my MRI the week after Christmas. My appointment with my Nuerosurgeon was the week later, on Monday the 3rd. As usual, I had to first see his nurse, the a resident, and then, finally, my doc. He does the usual tests, looks at my eyes, tests my reflexes, watches me walk.

Then he tells me that there has been some growth on the MRI scans. Not the original tumors, but the smaller ones he’s called “chips”. The growth is about 1 mm each. He goes over our various options for treatment; radiation, either the one day “Gamma Knife” or where it lasts several weeks. Also doing a clinical study of a new drug may be an option. He did not feel that surgery was an option on this one. Fine with me, I defineitely don’t want surgery again! So he sent me to go see my radiologist that I saw before to get his input. After everyones opinions have been gathered, it is all taken to what is known as the “Tumor Board”. This is a board of highly qualified specialists in various fields and they all meet to discuss the current cases and make a joint decision. My doc reminds me that this is very beneficial to me, because I am getting the best opinions from the best doctors in all of Wisconsin. That does make me feel better. What did not, was when he told me that it would be WEEKS before they would have their decision, but they would call me and let me know.

WEEKS? They are going to let me sit here for weeks worrying and wondering and freaking out? Physically, I was doing pretty good prior to my first visit. Few headaches, just an occasional anxiety attack and depression. Afterwards, headaches have gone to constant, anxiety attacks have quadrupled, and I’m a lot more depressed than before. Let’s just say, I’m not handling the pressure very good.

My boyfriend is no help. He is the one I should be able to lean on for emotional support right now, and what are his genious words of advice??? “Just don’t think about it”. Like it’s just gonna go away???????? He’s the one I supposed to be able to pour my heart out to, tell him all my fears, talk about the “what if’s”. Instead, I hear “Just try not to think about it”. Insensitive jerk!

And during the couple of weeks of waiting, along came my 30th birthday. Jeez, this is just what I needed for a birthday present, ya’ know? And my guy is locked up, so all he manages to make is a cheesey little picture frame with my cat’s picture in it. It just hurt, felt like he didn’t put a lot of thought into it, a lot of love. I know he tried, and I guess that is what counts.

So finally, around the end of January, I get the call. We are going to do radiation. My Radiologist had a family emergency and will be out for a few weeks, but we’ve scheduled another MRI for Febuary 23. A few weeks after that we should be starting the actual radiation. It takes awhile to map out exactly where to shoot and how much.

Anxiety has not diminished. It is still going crazy, out of control.