Meningioma Living

2011-10-07T22:31:00.000-07:00

I had written that tumor girl passed away, I am her mother and just thought it was important for you all to know

Tumors

2011-10-06T21:15:00.000-07:00

The tumors took over and tumor girl passed on Sept 22,2011

Leaning

2011-08-19T12:41:00.000-07:00

Been leaning a lot lately so they took me down for an MRI. I feel like I have gotten worse since i got here but if you think about it I was leaning in the RV and had trouble moving my left leg so who knows?

I have lost most of the work I did on my autobiography so I'm going to have to spend this weekend fixing it. I'll assk my parents to bring me one of those jump drives so it doesn't happen again. I had a lot done so its going to take awhile...

Bad News And Good News

2011-08-12T17:53:00.000-07:00

The physical therapy doc told me today that I may have to be wheelchair bound for the rest of my life, but my neurosurgeon said that the chemo therapy treatment has a real chance of working. It may ttake several months to a couple of years to see results, but it may work! Though I have to deal with the fact that in the short run I may be in a wheelchair for awhile.

The docs have me on a schedule where I have to get a suppository every night at 7pm to get my system regulated. They did it to me yesterday and I am already on the schedule, just waiting for my nurseto come in and tell me I can, plus I can't go to the bathroom by myself. I can't do most things by myself at this point.

Last night was the first night I actually got a really deep sleep. And it was for like 4 hours. It was great. Couldn't tell if I got back to sleep again or not, I think I di at least for a little while, but it was good, and I didn't wake up with a backache.

Started Chemo

2011-08-07T10:28:00.000-07:00

I was told there really was no chemo drug proven to work on Meningiomas, and there isn't, by my new docs are putting my on a drug called Hydrea. So far no side effects, because I was already feeling nauseous before they started me on it. They have me scheduled to be in rehab until Sept 6 which means I will be here for my birthday, but tht doesn't doesn't really matter because I am not surrounded by friends. So it will just be me and my parents.

In Rehab

2011-07-26T20:25:00.000-07:00

Just got moved over to rehab today. Its nicer here than the rehab in LA. I have my own room, for now, could get a roommate at any time. They serve meals in a dining room and although they don't force you to eat there, they encourage it. I had dinner there tonight. It was nice to socialize, plus its hard to eat in these hospital beds. I don't know if I'll male it to breakfast though.

I am very tired right now. I had my blood sugar level taken twice today, noit sure why. When I asked they said it could be because of a medication they have me on. The first reading was good, the second was a little high. I had a cupcake at dinner, I didn't order it, they got my order wrong but I ate it anyway. Who knew?

News

2011-07-26T09:42:00.000-07:00

Doc came in this morning and said that spinal mri showed a bulging disc but no tumor which is good... I still don't understand why I seem to be getting weaker on the left side even though they have upped the steroids. He also said that rehab is going to take me so here is my plan: get to the point where I am physically able to walk again and get in and out of the RV without much of a problem, I will probably still need help though, go do the sightseeing tour my dad had planned since there doesn't seem to be any other treatment options and just enjoy the rest of the time I have left. The only problem I have with this scenario is money, my social security checks were supposed to help pay for the trip and my last one has not yet been deposited thanks to the stupid government! Where do those bastards get off collecting $100,000's a year in pay and yet cutting off social security and medicare and such to people like me? I feel like going postal on all their asses right now and with the frontal lobe tumor I have, I could probably get away with it! Time to cry now...

Pain and Frusatration

2011-07-25T16:26:00.000-07:00

It took several hours to get the pain medicine today for my back when I got back from the mri. They had ordered it to go into my IV line, which was taken out a couple days ago so they had to get an order to give me a shot. Three hours later I was getting a shot in the butt! Then occupational therapy came by and had me do some arm exercises because I had already gotten cleaned up and brushed my teeth. Next up was physical therapy and by this time I was exhausted and couldn't really get my leg to work so that made me very frustrated. I cried a lot. They did find me a smaller AFO brace though. Right now I am still waiting to find out the results of the spinal mri and I am very uncomfortable!!!!!!!! And to top it all off I am PMS-ing!!! My vision is very blurry right now and my back is bothering me. My left temple is throbbing off and on. I really don't understand what could be causing all these symptoms. My left arm seems to be getting weaker and I am leaning more, but they upped my steroid dosage, it just doesn't make any sense! I want this to be over, I can't take it anymore!!!!!!! I am so tired of being this uncomfortable! My stomach is so big it feels like its going to pop, but I am constantly hungry. Its hard to eat in this bed because I can't get the tray close to me because of my big stomach!!!!!! UGH, I just want to freaking scream!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! All I can do is cry!!!!!

Finally Getting Docs To Listen To Me

2011-07-25T09:10:00.000-07:00

I just had an MRI of my spine because I told the doc about how my leg weakness is affected by the way I sit and he agreed that it was suspicious that it was a positional thing, whereas my last doc just brushed it off. Now I don't want to have a spinal tumor, but I at least want to be taken seriously! Also, I am going back to physical rehab, probably tomorrow, and am getting a new AFO, one that fits. I was told I could be in rehab for a few days to a couple of weeks, depending on how long it takes me to be able to get up stairs. Now all this is dependent on the results of the MRI, if I do have a spinal tumor that will change things. I don't know what to think though because they have raised the dose of my steroids and I am still very weak so its not just the swelling that is causing the weakness. I have no idea.

In Hospital

2011-07-22T20:57:00.000-07:00

My parents brought me into the ER yesterday morning because I was having a really tough time moving my left leg and my right eye kept twitching. I was able to get a CT scan and an MRI and they admitted me. How ironic is it that I was admitted on my two year anniversary from my last craniotomy! It is a very nice hospital and they are taking very good care of me. I have been seen by an internist, neurologist, neurosurgeon, and radiation oncologist in the past two days, as well as physical therapy. The neurosurgeon doesn't see a need for surgery but did mention something about some type of chemo. I am waiting to find out more about that. Plus they want to place me in rehab again and the physical therapist is going to try to get me a new AFO, one that fits because my leg has atrophied so much mine is too big. I think this is a really good thing that they brought me here, though I don't know how I'm going to pay for it without insurance. Someone from social services did come talk to me today to say they want to help and this is a non profit hospital so they are not going to send me away any time soon, they are going to make sure I get the treatment I need. It is a very nice place, way better than the hospitals I was in in LA!

Well, I'm really tired so I'm going to get ready to go to sleep, hoping that I can get some sleep tonight, didn't get much sleep last night.

So Uncomfortable!!!!!

2011-07-20T13:52:00.000-07:00

Everything I eat turns right into fat and settles in my stomach because I can't do anything! Its so frustrating, I have gained so much weight since the road trip. And of course it doesn't help that my parents tend to eat whatever they want and I lack the will power to say no to ice cream and such! I try doing the shake weight, but it hurts my side and gives me a headache, but I still do it.

My leg is getting weaker every day which may mean that the tumor is growing, but we won't know that until we get to Florida and get me residency and doctors and such. The good news is that the title to my Jeep arrived today so we can leave as soon as dad sells his Jeep. He's going to "buy" my Jeep and sell his because I will never be able to get into his Jeep and he will get more money for his.

I am drinking a lot of water because I am trying to flush out the fat and going to the bathroom is the only exercise I get. The problem is I keep getting swollen on my right side, my foot and leg. But
I go to the bathroom constantly I don't know how I can retain so much water! Plus it worries me because water retention in the lower extremities is also a sign of heart failure and I did gain a lot of weight rather quickly and sometimes have a pressure feeling in my chest. I don't want to die of heart failure before the brain tumors can do me in!

I just had to get up to go to the bathroom and I had a really hard time getting off the couch, so
I cursed God, still not sure about my faith. Then I finally get up and I almost fall trying to get to the bathroom. If I fall I'm stuck on the floor until one of my parents come back because they are working until 10pm today, but dad checks in occasionally and they will be back for dinner. Plus I put a pad on because I almost didn't make it in time! UGH!!!!!!!!!!!!!!!!!

Crying All Time

2011-07-16T15:15:00.000-07:00

I am breaking my parents hearts, I can just tell. I keep crying because I am frustrated and my parents have to sit here and watch and they can't do anything else to help me. I feel bad but I am so very frustrated and scared... No wonder they keep going for walks, they can't stand to see me like this and not be able to do anything for me. Meanwhile, I'm gaining weight every day because I can't do anything and that frustrates me more. My right leg and foot keeps swelling up on me, which scares me even more. It was ok after the road trip but now it just points to heart, liver, or kidney failure. As miserable as I am I really don't want to die, though at this point it would make things easier on everyone.

Very Tired

2011-07-15T15:33:00.000-07:00

Yesterday we went to Bear Country, Crazy Horse and drove around Needles Highway, which was really cool. We were gone most of the day, whiich wouldn't have been a problem, but the last couple hours were on a very windy road which was very hard on my back. I don't understand why the way I sit affects my leg so much. I told my original NS about it back when I had my last surgery because I thought maybe I have a spinal tumor but he dismissed it, but now its getting worse so when I finally get a new doc I am going to try to get a spinal mri, or ct at least. I had such a hard time moving my leg after that car trip and I've had a headache pretty much ever since. My pain killers are barely taking the edge off.

Biding My Time

2011-07-13T17:14:00.000-07:00

I'm just sitting here waiting... waiting for my parents to come back in, waiting for dinner, waiting for the pain killer to take effect, waiting for Susan to come back. She did finally show up yesterday but we didn't get to finish our session because my parents came home for dinner. She was supposed to come back in a few hours, but got busy and never returned.

My dad is outside right now putting a railing on the RV to help me get in and out. We didn't go anywhere today because it was supposed to rain off and on all day, and mom was really tired and so dad started on the railing. We are going to do some sight seeing tomorrow though. Should be fun, will be nice to get out, haven't been out in awhile.

I do still feel like I am getting worse. I feel so bad for my parents, they shouldn't have to see me like this. I should be taking care of them!

Hurting...

2011-07-09T19:03:00.000-07:00

I got out of the RV two days in a row and now today I have felt sick all day. My head is killing me and I have this weird pain all up my left side. It is not a rare feeling, have it almost every day, but today its really bad. My vision has been blurry all day too.

That woman Susan did end up coming over on Thursday and it did make me feel better. She said she wanted to come over today but she hasn't and since its so late I doubt she is coming.

My parents are outside talking to their friends and I am stuck inside with no friends, I'll be lucky if I can get this to post because the internet sucks so bad here! I was chatting with a friend last night and we are supposed to chat again tonight, but like I said, I can't keep a connection so who knows!

I did get to see Mount Rushmore yesterday, it was very cool. Want to do a lot more sightseeing before I go but right now I really do wish it were over. I know its really hard on my parents, they had to push me around in a wheelchair yesterday because we couldn't afford one I could roll myself and I am not strong enough to use the walker to walk around places like Mount Rushmore. I don't know if I'm going to make it to Florida. They are supposed to work camp here until the end of Aug, I don't even know if I will make it that long. I kinda don't want to because I am so miserable, but I would like to see more before I go. We are going to go see Devil's Tower one of these days, that should be cool. The more often I get in and out of the RV the easier it gets, but today I feel like shit so I have stayed in all day. I just wish there was a way I could lose weight, it would be so much easier. I brought the shake weight and have been doing that, but its not going to work overnight.

I have a tumor above my right ear, so I've been told. I thought it went away after the gamma knife but it grew back and is making the right side of my face feel funny and last night I got an earache. I also get the stabbing ice pick headaches there, which to me says its growing because that's how I felt before I was originally diagnosed.

Well, I don't know what else to say for now, except that I am utterly depressed because I am 40 years old, living with my parents in an RV that I cannot get in or out of without both of them there to help me. I have no friends here and nothing to do but watch what limited channels they have and try to get internet service. Today I spent a lot of time playing solitaire because I couldn't get online.

Miserable

2011-07-07T14:01:00.000-07:00

I cannot for the life of me get comfortable here. Any way that I try to sit makes me terribly uncomfortable. The internet here sucks, its free wi-fi, but I even tried tethering my cell phone to my computer and I can't watch videos without major buffering and they don't have many tv channels so I am stuck inside the RV all day with not much to do and I feel horrible! Right now I have that feeling I have mentioned before that there is a strap under my chin choking me and I am having trouble sitting up straight without tipping over! My parents want to take me to the store tonight, and I want to go, but I'm afraid I won't be able to get back in the RV if I leave! I am so miserable all I seem to do is pee and cry!

A woman who works here came over the other day. She does this thing called the Body Code, its a spiritual/ holistic type of thing and I did feel really good after she left. She said she wanted to work with me more and she was supposed to come by today but she hasn't shown up yet. I hope she does because I would like to leave the RV! If we do go out, my parents bought me a wheelchair so pit will be easier on me at the store, its just a matter of getting up and down the steps of the RV.

Left LA to Live With My Parents

2011-07-03T11:03:00.000-07:00

I am now in South Dakota living with my parents ibn their RV, mom and I arrived yesterday after a 2 1/2 day road trip. I, my mom, packed up all my stuff, sold it, donated, or threw it away, and took to the road because my tumors have taken over and I can no longer take care of myself.

I need my leg brace and a walker to get around and I get dizzy if I sit or stand for too long. I was able to get my old neurosurgeon to write me some prescriptions to keep me in meds for a few months until I can get settled. My parents are work camping at an RV park in South Dakota but they normally live in Florida. Depending on how well I do here they will finish their contract to the end of Aug, though I'm not sure that's going to happen because I am not doing too well. Then we will travel, see some sights on our way down to Florida where I can hopefully get a doctor and by then I may qualify for Medicare, I am not sure, I am still looking into that.

This RV is really hard to get up into with my bad leg. It takes both my parents helping me because there is no railing for me to pull myself up with. And getting down is not that easy either, for the same reason. I really don't have much trouble getting around inside though.

I brought my cat with me and my parents have a little dog. My cat is still hiding. The dog just wants to play but Gabby is scared, she had a rough trip being stuck in a carrier the whole trip, except when we were in the motels at night. I think the two of them are going to get along just fine though.

Well, like I said I get dizzy if I sit up for too long so its time to go lie down for a bit.

Had A Fit Today

2011-06-21T00:33:00.000-07:00

I was trying to put the leg rest of my recliner chair down this morning because I wanted to grab a notebook on a tray table next to me that had a listing of my posters in it so I could post some of my posters on craigslist. The leg portion wouldn't go down, I was pushing with all my strength with my right leg and my left leg was sticking straight out and the wrench mom had rigged to the chair the other day when the handle broke had fallen off and I just got so frustrated I finally let it out and started screaming, not crying, I cry every day. Today I screamed in frustration. And it felt good. My mom didn't like it though, but I told her I just needed to let it out. It didn't help that I hadn't gotten much sleep again. I can't wait to get out of here. Traveling is going to be hard though...

Not Doing Well

2011-06-15T19:22:00.000-07:00

So I am back up to 8mg of the steroids and I still don't have proper use of my leg and its sooooooo frustrating! I just want to cry all the time. The fact that its that time of the month isn't helping. And when I cry it upsets my mom, so thats bad. I fell the other day and got a really bad bruise on my back. It hurts like hell still and its almost been a week. Its going to be there for awhile too, because I still have bruises on my leg from when I fell a couple months ago.

I have been on the 8mg for several days now and I still feel like my brain is on fire! My stomach is killing me too, probably from the increase in steroids, and my vision is kinda blurry. I really am afraid that I don't have much time left. I just hope I am able to get around, to my going away party and to get in and out of the RV when we get there.

I put a link to follow mw on Twitter, I've been posting there a lot more than here, just because its quicker and easier and I don't feel like I have to say as much- mainly because they don't let you! so please, follow me!!!!

UGH!!!!!!

2011-06-08T22:36:00.000-07:00

My brain feels like it is on fire!!!!!!! Yesterday was supposed to be the first day without steroids at all and I did ok until the end of the night. I was trying to get up to go to the bathroom and I couldn't move my leg at all! Luckily I had steroids in my pill container by my chair so I took 1mg and today I called the doc to find out what to do. He said I could take 1mg a day for the next week and then call him again. Hopefully that will help because I had to scooch down the stairs on my butt again but I wanted to leave the apartment to go to my last brain tumor support group meeting.

Then after the meeting we headed over to the Prop union hall to post my set kit list on the board and I told the call board I was leaving and asked if there was anything I needed to do. She hooked me up with someone in the office who saw to it that I am going to be able to retire which means I will get all my benefits, including life insurance! I didn't think I had been in long enough! And I have no idea what other benefits I am eligible for!

I really need to start selling stuff. I sold 2 more Coke items on eBay but thats much much and I am pretty much broke at this point! Mom and I aren't going to have the gas money to get to South Dakota, not to mention eat!

My brain is on fire!!!!! I have been falling asleep off and on for the past couple hours because of my brain and I have not gotten any sleep recently and I wore myself out today so I'm calling it a night.

Steroid Withdrawal...

2011-06-04T02:08:00.000-07:00

Doc told me to come off steroids pretty fast and on the one hand I am doing pretty well. When Mom and I went out to go to Trader Joes the other day I had to scooch down the steps one at a time on my butt, but today I was able to walk down them! We went to the hospital to pick up my anti-seizure meds and I exhausted myself walking around, but my leg is doing much better, I think... my head hurts like hell today though, and the pain meds are not helping. Of course I didn't really get much sleep last night. Seems I only sleep every third night or so.

We posted ads on Craig's list and the Recycler and another free classified online ad listing for a garage type sale lasting all month long where people can call and come to the apartment and buy my stuff! So far no one has come, but I just posted the ads yesterday. I really need to start selling this stuff soon though, because I have a) I have no money and b) I already gave my 30 day notice and I have a lot of stuff to get rid of! So if you live in the Los Angeles area and you want to help me out, send me an email and I'll give you my address so you can come shopping at Chez Tumorgirl! If you want, you could buy my brain tumor Halloween costume! Or maybe one of my canes!

Mom Is Here

2011-06-02T01:23:00.000-07:00

Mom came in on Saturday and started cleaning right away. The first night she was here I couldn't make it up the stairs so I slept on my chair. I made it upstairs the next night. Also made it upstairs the day after that to take a shower, but had to have mom help me put the brace on to get out because I couldn't keep my leg in position. We went out to the store and I had to go down the steps one at a time on my ass and was so exhausted when we got home!

I am now on 2mg of the steroids and I am really having a hard time getting around. My foot is incredibly tingly.

I gave my 30 day notice today and posted an ad in Craigs list that people can come to my apartment and buy pretty much anything. Everything Must Go! Hopefully we can get rid of everything in a month and make some money doing it.

Heard From The Doc

2011-05-24T22:43:00.000-07:00

My old neurosurgeon called me yesterday after he looked at my new scans. He said that the tumors that were growing were not affecting my leg and that it was the swelling that was causing me problems. Then he suggested that I come down off of the steroids, which to me doesn't make much sense, but I really want to stop taking the steroids so I am doing what he says. I haver to say though, its only the first day and I am having such a hard time walking, harder than yesterday. Although I did not get much sleep last night either, my brain just would not shut off. I kept thinking about how I needed to ask my friend that was coming over today to help me ship some items I sold on eBay and ask her to take me grocery shopping. Plus I was worried about money, rightfully so, my social security check didn't post before we went to the store so my friend paid for the groceries for me. Tomorrow I am selling one of my necklaces to a new member of the support group, we are meeting for coffee. I am wondering how my leg will be working tomorrow...

Mom's Coming

2011-05-20T21:14:00.000-07:00

Mom called me the other night to tell me she bought a ticket to come here. She expected me to fight her, but I am quite relieved, actually I wish she was getting here sooner. Turns out one of my friends called her and told her I needed her. She's been talking to her for awhile now. And she convinced her to let me bring Gabby when I go back with her.Mom didn't think I should because of their new dog.

I took my mri results to my old neurosurgeon to see if he can help me, give me advice at least. I should hear something by Monday. Its getting really hard for me to walk around. And I am getting dizzy much more frequently. If I don't have surgery I don't know how long I have left, at least to function properly. I could be in a wheelchair in less than a month.

My friend, the one thats been talking to my mom, came over yesterday to help me clean. She let me cry and we talked for awhile. She has been such a big help to me but she can't be here for me as much as she and I would like, she wishes she could but she's got kids to take care of. She recently adopted some boys, that's the kind of person she is. She is coming back on Sunday. I have felt so alone for so long its really nice to know that she has had my back this whole time. I knew that she cared, but not enough to get my mom out here.

My paperwork for my LLC came in the mail today. I think I can finally start my online business. Just have to make sure everything is in order. I have lots to sell and now I'm going to have help selling it!

Getting Worse Faster Than I Expected

2011-05-16T01:05:00.001-07:00

Tonight I went to a friends place to watch a movie and when I went to leave I had the hardest time. There its a staircase that its open and when I started to walk down it I panicked! I had to go down one step at a time on my butt! My friends were very helpful and I even got to cry on one friends shoulder which doesn't happen very often, but I realize I am getting worse way faster. Plus I had a seizure in my right leg this morning. I forgot to take my meds yesterday. So that means they are growing on the left side now too! I think I'm going to end up in a wheelchair soon! Got to get out of this apartment.