A Word Before Bed

Just wanted to say something before I go to bed tonight. I went to my class today, it was about fall protection, pretty much stuff that I may never need to know or that I already knew, or that pertains to other people's jobs more than mine, but I will get paid for it in 4-6 weeks so whatever. In the class was this woman that I worked with on a couple movies many years ago. I was a set PA back then and she was the On Set Dresser which means she was in charge of moving all the furniture and set pieces, anything set dressing was her job. It is similar to props and in the same union, I could do the job, but it is a difficult one and actually pays less than props. Anyway, she remembered me, she didn't remember my name but she knew that we had worked together and she remembered that I recycled all the cans and bottles on set so she did remember me. It was very nice to see her again. She is very good at her job, I remember thinking if she could do it I could do it, in my quest of deciding what to do back then. Anyway, we chatted a little about me getting into the union and everything and she asked what was going on with me, because I had a brace on my leg and was using a cane so I told her about the brain tumors and how I have surgery in two weeks and how a couple years ago I was back to work in no time so hopefully this time will be the same and by the time I am better work will pick up, because there is still no work out there. She wished me the best and when the class was over I went shopping again, needed to stock up on frozen dinners.

I made it through Target ok and when I got home I managed to get my groceries up in one trip, though I left my cleaning supplies in the car, I will bring them up tomorrow when I take out the trash. I can't believe how sore my muscles feel. I feel like I have been working out like crazy and yet all I did was carry up the groceries. Well, I also did some rearranging of my closet. A friend is having a birthday party on Saturday and I said she could borrow my coolers so I dug them out of my closet, of course they were in the back on the bottom! I was invited to the party but it is at the beach and I don't think its a good idea for me to spend the day out at the beach in the wind and possible cold and not to mention the walking in the sand. My friend was cool with me not coming and said I need to get better for good! I haven't seen her since Jan I think, but I guess I will see her for at least a few minutes when she comes to get the coolers. She is also working on the short film that I am doing for our mutual friend. She does wardrobe.

I took a half a vicodin last night at bedtime, and the night before. I just ache so much at the end of the day. I don't want to get in the habit of it, but on the other hand in two weeks I will be in so much pain that it will be necessary so habit won't be part of it! I only take half of the pill, thats all I need. It makes me feel good. I like that. Sometimes its nice to be able to shut down. I can't drink, I don't smoke anymore and lord knows I haven't had sex in forever so what else am I going to do! I want to try to play rock band tomorrow to help release some tension but I am wondering if I will be able to with as achey as I have been. I should try though. Get some exercise. I also need to clean. Keep the place clean so I don't get sick. I bought lots of cleaning products at Target today. I also need to send in my invoice so I can get paid for the job I did. Lots to do tomorrow. And Fri I need to go get my car serviced, it is in desperate need of an oil change and tire rotation. I want to make sure it is in good shape for my mom. When she was out here before she was driving to see me at the hospital and the car broke down on her. I don't want that to happen again. But she will have my wallet and my AAA card on her so she will be ok, just trying to keep it from happening again.

Well, I made it through over a week of knowing that surgery was coming and although I still have two weeks to go at least the days seem to be going pretty fast. I have been keeping myself busy researching things for my friend's short film, playing on facebook, etc... tomorrow I have 3 Netflix discs coming, that will help pass the time. This time in two weeks I will be in the hospital. And the healing will have begun...

Two Weeks Of Waiting

I hate waiting. Its the worst. Knowing that the procedure is coming and that there is healing to be done afterwords, lets just get it over with already! I tried so hard to push for a sooner date but the earliest I could get is still two weeks away. That means two more weeks of being on steroids and gaining more weight, I swear I have gained 1o lbs since I went on them! Two more weeks of my leg getting weaker, its getting harder to carry things and taking a shower is really getting scary. I have a shower chair, but I really don't want to use it if I don't have to. I know that once the surgery is over the healing will begin, no matter how bad it starts out, whether my leg is really bad or better than it is now, that doesn't matter, I can deal with that. I already know how to deal with that. Its the waiting that is so incredibly hard to deal with!!!

I am also trying to stay inside, except that today I needed to go to the bank and the store and tomorrow I need to go to a class for the union I am in. I need to do the class because in like a month I will get a check for $30 for taking the class, tax free! Its a class I need to take to be able to work in the union and its due by some time in Aug so I really need to take it and the money will come at a good time. Next week I am filled with days of doc appts. Monday I have to go back to the foot doc for follow up on the toe. Tues I have a follow up with the neurosurgeon. He scheduled it back when we planned to do gamma knife but I figured I'd keep it because I have many questions to ask him about the surgery this time around and this way I will get my time with him because I don't always get to talk to him before the surgery. I am writing my questions down and making sure I get all my answers this time. Then on Wed I have to go get all my pre ops done. Then my mom comes in on the 21st in the morning. My surgery is the 22nd in the afternoon. I hate afternoon surgeries! They tell you not to eat after midnight the night before but then your surgery isn't until like 4pm and you are starving and then if something holds up the surgery forget about it! Sucks. I was told I could have a light breakfast but that was it. I just might have a big meal before midnight. And sleep in if possible. My mom will be on east coast time so it will be hard for her to sleep in, but we'll see, she'll probably just clean. She never thinks my place is clean enough and truthfully it isn't! I admit it!

Becasue of the weakness in my leg I got out my first AFO brace so I would feel safer walking around carrying stuff. But then I realized that although it was helping me carry stuff it wasn't letting my foot move and so it allowed my foot to get weaker. So I have decided to try to not wear the old AFO and do as much as I can without it, but if I need it I will wear it. Say if I got a call for a union job, although I know I shouldn't take it I would take it and wear the old AFO. The new AFO does not allow me to carry stuff as easily as I used to be able to, that is how weak my leg has gotten. I did tell the doc office today. Just thought they should know. But the old AFO still fits and it does help so at least I know that. I wore the new AFO out to the store today and carrying the grocery bags up the stairs wasn't as easy as it used to be! I probably could have done it with the old AFO but I will wait until that is absolutely necessary before I go that far. I am still trying to do the stretches and stuff they showed me at PT but there is only so much I can do if the brain doesn't want to cooperate! Very frustrating! I just wish it were over already!

Thoughts

I have had a massive array of thoughts going through my head this past week. The main one of course being why? I have been pretty good at remaining level headed at the fact that people get sick and this is not about me personally, blah blah, but right now I really feel like the universe's punching bag. My question before about God and how I thought that perhaps my tumors grew and then I got the job as a sorry for that kinda thing ya know, but now that is just ridiculous! I was given my first job in two years and I had to quit because the tumors were weakening my leg so much! What the hell is with that??? That is not God that is just mean and wrong on so many levels. I have no idea how I am going to support myself through this. I don't think I have any disability left and if I do the last time I collected I only got $200 a week. Not gonna cut it. I mean one week has to go to pay cobra for Aug just to keep me in meds and follow ups. How am I gonna eat and stay in my apartment? I checked into welfare and that is a process that takes forever! I don't understand. Why couldn't this have happened sooner when I had more money or something? I don't care about the damn tumors, I can get over that its that its ruining my life, well, what I am trying to make of a life that is, my career and such.

Plus I have been going through this in my head that if I had talked to my doc when the symptoms first started we could've done the surgery by now but I was so ready to believe that the tumors were dead that I blamed the symptoms on coming off of Lexapro! How stupid!!! I could be recovering by now instead of suffering! I am swollen from the steroids, and sweating like its a freaking sauna everywhere I go! I can't stand it! And I still have to wait almost three weeks to get it over with! how could I be so blind? I couldn't walk to the bathroom in the middle of the night without my walker, I knew something was wrong but I said nothing! I have only myself to blame. I was so desperate for the tumors to be dead I actually convinced myself it was a side effect of coming off a medication that made me that weak! I feel like a freaking idiot! But Lexapro withdrawal side effects are sometimes that severe so how the hell was I supposed to know?

My last MRI said I had no new growth and the CT scan I had in, what Feb, said there was no change, so why would I think there was growth. Freaking radiologists! I am going to have every new MRI scrutinized from now on. My doc says that these tumors are new yet none of my scans showed new tumors before this and this scan said these tumors grew dramatically, so when did they first appear?????? What does a person have to do to get real answers??????? Every follow up appointment from now on I am going to have my doc go through the scan with me and compare it with the previous because I am not going through this again! If the report says no new growth I want to make sure it is true! I am so tired of this. From the very beginning, the first scan I was told I had two tumors and I later found out I had 4 the whole time. How many freaking tumors do I have?? I have no freaking clue! That is sad! And you know what, this time I am going to get a piece of this tumor for myself, I am going to make sure the doc keeps a piece for me so I can keep it! Well, I don't know if he can, but I am sure gonna try! I want to see it! Or maybe he can at least get pictures for me. I need to see it, face it!

Well, I'm done ranting for now, I was much more pissed aat the beginning of the week, there probably would have been a lot more, but I waited to post until I talked to my mom so I had time to calm down, though I am a bit fiesty this morning, probably because its my last day prepping the movie I have to give up! So not fair! Oh and one more thing, why am I still going through this alone? All I want is someone to be here for me, to hold my hand or give me a shoulder to cry on, I even called people this week looking for it to no avail, nothing, I have no one! Sorry, I know there are people that consider themselves my friends who would like to be here for me but can't because they are thousands of miles away, but that doesn't help me, I need someone here, now! Why is that such an unreasonable request? Everyone says, if you need something let me know but when I try I get nothing! Its very hard for me to ask for help and this week I actually put myslef out there and wanted someone, a shoulder to cry on and I couldn't find one! How sad is that? Again, really not fair!!!!!!!!!! I deserve better! Friends who can't or won't be there for you aren't really friends and so where does that leave you? All alone. Again. Loneliness sucks, more so than the tumors sometimes. Just saying. And I shouldn't have to be the one reaching out, with this news, people should be coming to me, but nope, nothing. Nothing but loneliness. Again, this is not meant for those who would be here if they could and I know some of you are reading this. Just saying. I could really use a good friend right about now, in person, but alas, there is no one. I don't even understand why I don't have any friends, I am a good loyal friend, I guess people just can't handle the tumors.

Call From Neurosurgeon

On Monday I was at the prop house prepping for the movie I got when my neurosurgeon called me, out of the blue. I was expecting to hear from his office, about a date for the gamma knife, but I was not expecting to actually get a phone call from him. He wanted to tell me that he discussed my case with the gamma knife board again and they realized that the tumors that have grown are not tumors that were treated with gamma knife. He said all the tumors they treated with gamma knife have stayed the same which means these are new, which means the MRI reports that stated no new growth were wrong! I really am going to be very on these people from now on about all these different tumors! Anyway, he wants to do a surgery to remove the two new tumors and he thinks this will give me the best chance of getting my leg back. He said that gamma knife will have little effect on my leg but if the tumors are removed, like before I will have the chance to get the leg back. And my leg has gotten worse. Just in the past week it has gotten worse, it is not fun. So when he first called I said I needed to think about it, but I should have said yes right then and there because in less than a half an hour later I called back and he was already gone. But I left my message that I wanted to do surgery and all the reasons why I feel it is necessary to do it ASAP and waited for a call. Again with the waiting. The next morning he did call me back and we talked about it and I asked him if the "vertigo" sensations are related and told him what it feels like, probably not true vertigo by the way, and he said very likely. My leg and back are sending signals that are getting mixed up on the way to the brain so the brain really isn't sure where my leg is and I feel a bit off balance. So, he agreed to schedule the surgery relatively soon and said he would call his assistant in his office and let her know so she could get started. This was around 11:30 am on Tuesday. When I hadn't heard anything back from her by 4:30 pm Tuesday I decided to give her a call just to make sure she was working on it. He never called and told her! If I hadn't called her she wouldn't have known! UGH!!!! So she got started on the paperwork right then and got a call out to him so she could start working on a schedule. I didn't want to tell my parents until I had an idea of when because I don't want my mom flying out here tomorrow! So again I waited. I called again on Wed and she had a couple dates in mind but was waiting to talk to doc, no big deal, I was working late anyway so didn't have a chance to talk to mom anyway. But by thursday I really needed to know. I was having anxiety dreams about my parents spending money on weird things because they didn't know! So I called today and got a date and then I called my mom. She took it pretty well, but she was with some friends having drinks so we didn't talk for very long. We will probably talk again tomorrow, after she has a chance to talk to dad about it. I want to make sure she doesn't come out too soon. I can't afford it and neither can they.

Yesterday I called a few friends to start telling people. I was tired of keeping my secret. Only one friend called me back yesterday. It was a nice talk though, she has always been very supportive. Another friend texted with a promise to call the next day, which she did and we had a nice conversation too. The other friend never called but IM'd me on facebook apologizing for being rude but he's going through something so he's doing the hiding from people thing. Whatever. I told him what was going on. That was that, still don't know what his problem is, he wouldn't tell me. Told some more people. And now putting it here. Also sent out my massive email about it too. Got some replies about it already, people can be very supportive via email. We'll see what happens come surgery day. My last surgery only two friends came to visit me in hospital, one is someone I am sure will come, and the other I haven't spoken too almost since, she stopped returning my calls. Not sure why, she was having family troubles and wouldn't let me in. Happens a lot. Friends won't let me be there for them and then they go away. Sad. Their loss, I'm moving on. This is going to be my second second chance! And its gonna be great! Whether I get visitors or not, doesn't matter. I will survive and conquer and get my leg back and then make a name for myself in the prop world! Now I just have to wait a little under three weeks for the surgery :-(

Not Sure...

Well, I am trying to stay cool about everything, but I have recently been living in my head and feeling a bit sorry for myself because after giving out the bad news I guess I was so good at reassuring everyone that I was doing fine that no one felt the need to call or want to even try to spend any time with me. One friend asked me to do something and I declined because it was something I would really rather not do, lets just say it involved country music and line dancing so I think its fair to say it was ok of me to turn that invite down. Plus I later found out I may have been a third wheel anyway. So thats where I have been, wishing that just one of my friends cared enough to at least want to get together to see me before I go do this procedure. I know the procedure itself is not going to kill me, but that is not the point. The tumors have grown and no one seems to care! Sure they responded with follow up emails saying how strong they think I am and what an inspiration I am but what I want and need is for someone to actually want to spend some time with me! Is that so wrong? Otherwise what am I being so strong for? And worst of all, most of that support has come from people who are not even local, so email is all they can do! What happened to all my friends? Where did they go? I know I stopped calling people because I don't have any money and I don't want to say hey lets get together but you have to treat because I don't have any money! Oh well. Part of me really wants to fight like hell because I know I am not done here and another part of me is just wondering why the hell I should!

I met with my boss to get some answers about this movie. Got some but not enough. There is a production meeting tomorrow where I can hopefully get the rest of my answers but these people are amateurs and I think this is going to be a big mistake. I'm a little nervous about it. My boss had poison oak yestday from the tech scout. Our first week of work is in the mountains which is going to be tricky enough for me but now I have to worry about poison oak, black widow spiders, and snakes. A little nervous. I am going shopping today to buy poison oak protection, I have my canes for snake protection and I did some research on the spiders, not as scary as they sound, I should be fine. I just really hate spiders. I am already on a steroid so poison oak and a spider bite won't kill me, but seeing a snake might, so lets hope that doesn't happen! Have lots of work to do today, have to take pictures of all the stuff I have that we can use so they can save money, though it won't make me any, maybe I can try to get a rental fee out of it, and do all my shopping. Tomorrow I have doc appointments, the production meeting and I have to go to the prop house to start pulling the props we want to rent. I am going to be totally busy from here on out.

Oh, I forgot to mention the big discovery I think I may have made. Remember when I said that my doc thought that the Lexapro may have been what was inhibiting the tumor growth? Well I tried to think about all the things I have done differently this year since my last MRI in Dec and the one thing I could remember was that I stopped drinking aloe vera juice! I started drinking aloe vera juice back when I was diagnosed because a friend of mine told me that her friend said it could inhibit tumor growth, so I drank it everyday. At the beginning of the year I stopped buying it because I was low on money, had to cut back on things and although my tumors had not grown I could not prove it was the aloe vera juice that was responsible so I stopped buying and therefore stopped drinking it. 6 months later my tumors had grwon dramatically. Coiincidence? I don't know but as soon as I realized this I went and bought some. I also did some more research on it. Aloe Vera Juice is very good for you. Its good for the digestive system, which mine has been a complete mess lately so that will be a welcome relief for sure when it kicks in! It also helps with weight loss. It also helps boost the immune system, something I really need right now with being on the steroids, and it gives valuable vitamins and minerals, its like it looks at your body and sees what it needs and gives it to it! That is what the one web site said anyway. All I know is that since I stopped drinking it I have gained more weight, had irregularity that even Activia can't help with and my tumors grew so I'm all for spending the $8 a bottle every other week or whatever it was to keep myself healthy again! I buy it at Trader Joes and it can also be found at Walmart. There may be better brands, but this is all I can afford at the time and it was what was working before so I'll stick with it!

Doing OK

I am hanging in there and doing OK with the waiting. It is just as frustrating trying to get things going with the gamma knife as it was the first time around, except that this time I know about it so I know who to call, its just not doing any good, and neither place is calling me back!!!! I am tentatively scheduled to have the gamma knife on July 16th but that could change if the authorization from the insurance company doesn't come through in time and they decide to schedule someone else in my time slot because they can't really hold a time for me without authorization. So I wait...

In the meantime I am prepping the movie I am doing, which also involves waiting. I have a script, that has no day one, day 2 differentiation, which makes a breakdown difficult, and it has no scene numbers, which also makes a breakdown difficult. I went through the entire script and numbered it myself, whenever there is a change in INT EXT it is a new scene, but unfortunately I missed a couple, frustrating, plus there were other parts that just say SAME LATER which should be new scenes, but who knows, its really up to the script supervisor. So I am waiting for that info. I am also waiting to hear from my boss because he wanted a props price breakdown today and I kinda have one, but I have so many questions that it is not complete so I really need to meet with him again so we can go over all my questions. I called him this morning and left him a message and sent him an email and still haven't heard from him so I wait...

Other than that I am doing pretty well. Just a little nervous. My podiatrist did not feel the need to put me on antibiotics for the small infection from my ingrown toe nail so I went and bought an immune boosting supplement. My toe still feels a little sore so I am not sure if the infection is gone yet or not. I just don't want anything to get in the way of me having the gamma knife and being able to fully recover! The supplement I bought said to take 2 or more capsules twice a day and I was taking 2 so today I starting taking 3 at a time and I am starting to feel better. Gonna kick this infections ass!

I was completely exhausted yesterday after PT and then acupuncture, plus I had gotten up early, thanks to my pain in the butt cat, but I realize that acupuncture was supposed to relax me so I tried not to get too worried about it. I think once I start working I am going to be fine, the body does need time to readjust, but I went back to work about what, 7 or 8 weeks after my first surgery and I was fine! My only problem right now is that my body isn't used to working that much. That's why its good to be up early and getting out as much as I have. But I am trying to get as much sleep as I can because when the movie starts I will not be getting much sleep!

Waiting For The Date

I was hoping to hear from the neurosurgeon's office about when they want to do my gamma knife, but they didn't call on Friday so hopefully I will hear something on Monday. The waiting is the hardest part!

So I said before that I had more to write. Here it goes. Its been a very confusing week. On Tuesday when I got the news I thought for sure that there couldn't possibly be a God, not because this was happening to me but because it was happening to my father's daughter, after all he went through recently with my brother killing himself and my mom having gallbladder surgery. It just doesn't seem right. My dad may not have been much in his youth, he had a wife and two kids by the time he graduated high school, he's made mistakes. But in the past decade he found God and became baptized in the Catholic church. He is very invested in the church and does lots of activities with them and for them. He is even a Eucharistic minister. So he has done all that for God and this is how God thanks him? Doesn't make any sense to me. I was bound and determined to not believe in God, but then I heard from a friend who had until recently been for lack of a better way to put it, hiding. He asked me to hang out with him, and although we never ended up doing anything, he forgot about me I guess, it was nice to hear from him. And I got a job offer. The pay is decent and although its not union and will not get me insurance hours my boss is willing to give me time off to have the gamma knife. And I also got a free year to a dating website. Just weird. Its like God said, "Sorry I have to make your tumors grow, but here are some consolation prizes!" Because up until now there has been nothing at all! Just messing with my mind and I really don't know what to think! And since I don't believe in organized religion I don't feel comfortable going to a church of any sort asking for spiritual guidance, I guess its just something I have to figure out on my own.

As far as my head goes, it feels better now that I am on steroids, I can tell the swelling has gone down and I am not having any headaches. My leg is also doing much better which is probably a combination of the steroids and the physical therapy. Either way, I like it. Its nice to be able to walk a bit better again. It was very scary for awhile there when I could not even walk to the bathroom in the middle of the night without my walker! I am still waiting for the infection in my toe nail to heal and am hoping that the supplements that I bought are helping. It is called Kyolic Aged Garlic Extract Immune Formula 103 and it also has Vit C, Astragalus, a bunch of different types of mushrooms and olive leaf extract. The olive leaf extract is supposed to be like a natural antibiotic so hopefully it is working! I'll find out on Monday when I go to have my toe nail permanently partially removed, like before but a different part so that toe is just going to have this little sliver of a nail down the middle! Gonna be weird looking!

I was hoping the steroids taking the swelling down would help with the vertigo but so far it hasn't. Guess that's something else I'm gonna have to figure out on my own. Neurosurgeon knows about it but made no comments and none of the other docs have been able to give me an answer. Oh well.