Wednesday, September 10, 2008

I need a new digital camera

So, time for something new?

Treatments are to start soon. Probably in a couple of weeks unless I can squeeze in some second opinions before I begin. I had an appointment yesterday with radiation oncology to simulate the treatment that will be given to me. They took another CT scan and made a mold of my face and neck out of this plastic thing. It's basically going to be like a cover/shield when I get into the machine. It keeps me still.

I'm pretty excited about a trip that I was invited to. Disneyland! Can you believe that I haven't been since 97 Grad Nite? I'm going with a couple ladies from work and it's going to be pretty awesome. Maybe I'll catch a photo with Eeyore? ;)

Lesley is coming out to visit me again later this month. She'll be here on the 25th.

Other than that, things are pretty much as they were before. Things are getting back to normal at work, and I still don't have any headaches.

Monday, September 1, 2008

Anaplastic Astrocytoma

I know it's a mouthful.

Grade III. The worst is grade IV- a glioblastoma multiforme. I don't have that one.

It's cancer. I'm ok. There's not a very good nor a very definitive prognosis.

The tumor is too large to operate. 5 x 6 x 9 centimeters. About the size of my fist all squished in my right Temporal lobe. (It's good that it's in my least dominant lobe of the brain; thank goodness I am right handed).

Radiation therapy and Chemotherapy is standard treatment. Radiation has been proven to be effective, the chemo--not so much. I'm not sure if I will undergo chemotherapy until I get a second opinion and some additional questions answered. Much of the research and articles available online state that chemotherapy is not a proven beneficial treatment for this type of tumor/cancer. So I don't want to be sick as a dog and on my ass for a year or lying in some bed if I don't have to. Oncologists will try to tell me that my lifespan will be even shorter if I don't do the chemo, but then they also tell me to try and do normal things and have a positive outlook. I would like to try to do the normal things I enjoy doing, and since there is no way to tell how my body will respond with chemo, and if it's not even all that beneficial...


The enormity of the situation is still a lot to swallow and a little too big to wrap my arms around at this point.

Right now the best thing that can help me is all my family and friends' smiling faces, normal daily activities and routines, a positive outlook, etc.

I'll write more after I meet with the radiology oncologist sometime this week. I'll write more after my consultation with a nurse from Loma Linda University's proton therapy program. A treatment option my loving uncle recommended that I look into..

See you all soon.

Sunday, August 24, 2008

The Waiting is the Hardest Part

I will usually try to think of some silly lyrics or song title to name my posts cause I'm a nerd like that.

I don't know for sure that I have cancer. I don't know what my next step will be. I don't know that the tumor is even malignant. There have been hints, worst case scenarios, but mostly just uncertainty.

After I came out of surgery and was sent to recovery, a surgeon spoke to my dad and said these things:

"She has a long road ahead of her."

"It will have to be removed."

"She will need Chemo."


Now, no doctor nor the neurosurgeon assigned to my case has even said any of these things to me. I have only been told that it takes two weeks for the results of the biopsy to come back from pathology. By the time that my September 11 follow up appointment rolls around, it will have been 3 weeks and 3 days. I was told I couldn't drive for at least a week, but that's it. Tomorrow I am going to hunt down a doctor or nurse to get a release to go back to work. There is not a chance in hell that I am going to sit around the house and dwell on the situation. I'm going to jump right back to normal activities ASAP. I want to get back to work...

Alright enough of that--Lesley got married this weekend!! For those of us who know her well it's amazing to see her interested in someone at all. Many boys have tried, many have failed. She is going to enjoy a full week of honeymoon bliss with her man up in Tahoe/Truckee/Bridgeport just hiking and fishing. :) She told Jeremy that he could plan the honeymoon, but relaxing by the lake and soaking up the rays is Lesley's style anyhow.

Here's a picture from Lesley's wedding that I had to STEAL from Jennifer's page since she is taking her sweet time with emailing me those pictures...

More soon.

Monday, August 18, 2008

Head Games

It's Monday August 18. I woke up at 6:00 am because I think I heard the person in the bed next to me. I'm still hooked up to an IV receiving fluids because I am unable to eat or drink.

But I am still not in the books (on the schedule) for a biopsy just yet. I have no idea when or if I will be going into surgery today. The lack of information and the snoring going on next to me is making me have a headache and go crazy. I had to leave my room and go sit down the hall in this waiting area where there are computers. The sun is rising at it looks beautiful.

But I'm thirsty.

I don't like the bathroom in my room so I get up and walk myself and my IV stand to the bathroom down the hall. Those ones are supposed to be cleaned regularly. I also do it just to get up and move. I've been walking around barefoot and the nurses tell me that's not ok! Who knows what's on these floors they say...

I say it's too hot to wear socks.

My dad got a hotel and a pizza last night. Judy brought me some cheerful flowers to brighten my room. Adam brought me some of my silly historical fiction books that I checked out from the library and my cell phone charger and thankfully, my laptop. I feel better having this stuff with me. It's hard not to lose your mind with anticipation, anxiety, and impatience while you're waiting to see if your head is going to be cut open and tested. I'm not worried about anything except missing Lesley's wedding. I want to wear that beautiful dress, celebrate with her and be there for every moment. I'm not worried about what this could be (yet) just worried that the doctor's are taking their sweet time before getting around to my case.

Seriously, how much does an overnight hospital stay cost? I've been here too long already.

Anyway, I appreciate all the calls, the visits, (Thank you Clay) and the conversation while I wait. Bear in mind though, I'm leaving this place if they don't bring me in today. I'm ready to get off the roller coaster!

Wednesday, August 13, 2008

Dazed and Confused

I've finally calmed down enough to write another blog.

After a week of headaches, last weekend I thought I should catch up on some rest. Impossible actually, you cant "catch up" on missed rest. What I should of said was that I tried to make the time to rest this weekend. I got a little..

I've been feeling a little out of sorts ever since I got back from Urgent Care after the second Migraine. I just assumed I was loopy from the morphine given to me.

Then this week was really hard as far as work is concerned. Monday-Thursday, gone in a flash. I will be at my desk working, I'll be in the office for an hour, and all of a sudden it's lunchtime and then I'm going home. This isn't a simple case of "Time flies when you're having fun." This is work, work is work. Sometimes its fun, mostly it's just work. That has probably been the most bizarre feeling I've felt since the recent migraine episodes. Have you ever felt like time has gotten away from you and you don't know where it went?

"Then one day you find ten years have got behind you, no one told you when to run..."

(Sorry, always time for a Floyd tangent)

I've been having a hard time concentrating on anything. Work, what I'm doing, what I'm thinking, even speaking has been a little challenging for me this week. I've been slurring over my words and that makes me frustrated. There's nothing more annoying than a person stumbling over their words while you're trying to listen to what they're saying. (BTW, I hate that they're/their/etc is improper grammar when used with "a person." Who really wants to say his or her all the time instead when you're just generally speakaing?)

I even got so flustered and embarrassed just trying to talk to my roommate the other day. I was so embarrassed I had to leave the house and go for a drive. Its an uncomfortable feeling, feeling like you don't know what's going on-hence being Dazed and Confused. I'm not on drugs, but apparently I have been acting like it, and sometimes it's kind of fun actually, feeling all loopy and giddy and shit. There are also other strange ideas circling my head but I can't disclose any of that here right now. :)

At any rate my MRI is scheduled for Thursday evening at 7:30 at the UC Davis Medical Center. I'm a little nervous about getting into that tiny little machine, but mostly I just want the Doctor or Neurologist or whomever to sit with me afterwards and show me the pictures of my brain. Seriously, that would be interesting to see! But, I experience more frequently the results in the mail 2 weeks later. My primary health care physician thinks the recent headaches are nothing, simply related to hormones and perhaps the birth control pills. I haven't taken any pills in a few weeks, but will pick up a new prescription tomorrow to start again.

Josh introduced me to Quickly, an Asian tea shop downtown. I really love these bubble milk tea (no tapioca) beverages. I tried a Jasmine milk tea as well recently, it was weird because it tasted like I was drinking flowers.

Oh I'm now listening to "Evil Urges" by My Morning Jacket. My iTunes is currently on shuffle mode. It's 94 degrees INSIDE my house tonight, so I am sitting inside with the door open and the lights off. I have some "evil urges" of my own now.

Wednesday, August 6, 2008

Is it Lupus?

Of course it's not lupus but I was imagining all the crazy things that could be causing my onset of recent migraines. (2 in one week and none ever before). So I had my follow up Dr. Appt today with my primary care physician to go over the events that took place when I had the second migraine. He said he wasn't going to approve or authorize any future shots at an urgent care clinic since they gave me morphine for the pain. He gave me something thats of a milder nature,(Toradol) and that is ok. I don't really remember everything that happened sunday and surprisingly the effects of morphine stayed with me a couple of days. I don't know how, but I got a lot of work done on Tuesday and Wednesday and I don't remember where the time went. A couple of coworkers pointed out that I had a bruise on my forehead as well that I had never noticed. Maybe its from resting my head on the toilet while I was experiencing the huge bouts of nausea?

Anyway, perhaps in an effort to reassure me (though I'm not sure why-because I didn't ask) the doctor has ordered an MRI of my brain just to make sure: "It's not a tumor!" He said I should take some nausea pills in case I get claustrophobic in that tiny little space. I said that I would be fine. We just have to get the approval from Blue Cross/Blue Shield PPO before I can take the exam. I don't want to get stuck with another huge hospital bill like I did after the kidney stones. I won't even go into that because I will get stressed. By the way, how do you know if your body feels stressed? How does that cause headaches? It's not like I clench my fists and jaw or anything...

After feeling a little loopy for a couple days I decided to go for a swim after work. I got in the pool, forgot my goggles so I had to swim without them. Then my head started throbbing, but it didn't feel like a migraine and there wasn't any nausea so I kept swimming. Just like Dora would say....

Little things are going on this week, like I also got a call from the alterations lady who said there were black spots on my dress, and I was frustrated because I noticed that there wasn't anything wrong with the dress when I dropped it off! And she fitted me for the hem too, so how come she didn't notice it sooner? Anyway I went by there today and my dress wasn't there, apparently they took it upon themselves to get the dress dry cleaned, so hopefully all turns out well. I am maid of honor in a couple weeks! By the way, I am looking forward to seeing you all there. You know that the invite said the Newkirk Family, right? Lesley said that the only ones who RSVP'd were Scott and Jen.

Which reminds me...I've got to send out another evite....

Thursday, July 31, 2008

Wednesday July 30th

As you may read this, you may think that I'm a total dummy, that the answer was completely obvious and staring me in the face. Well I was a dummy and I couldn't see what was really going on around me.

This was yesterday, wednesday July 30 as I've already said. I woke up with an excruciating headache. I've been getting headaches all week. Three weeks ago I was having painful headaches too, but they weren't like the ones I was having this week. Wednesday morning I woke up with a huge headache and took Advil like any other person would do with a headache, and then I got ready for work. I usually check my email before I leave the house and as I was staring at the computer I started to feel nauseated. But I hadn't had anything to eat so I couldn't throw up anything. So I left for work.

I think I might have been at work for about an hour when I started to feel worse. I felt my throat tighten like I was going to vomit, but there wasn't anything to vomit. So I kept my head over my trash can at my cubicle and just sat there, hoping something would happen. I still tried to get some work done, but then I was having trouble viewing my function keys that I need to use when I'm in the system. I managed to get an email out to my interim boss, and told her that I was on the phone trying to make an appointment to see a doctor. By the time I had finished typing the email I had an appointment at 3 p.m.

So I told my teammate and buddy that I was leaving, that I wasn't feeling well and I c ould no longer see my computer screen completely. All I saw were cursors flashing. Then I went to the elevator to go down to the underground parking garage to get in my car and drive home. My eyes were still seeing flashing cursors but I thought I was fine and though i would be just fine once I got home. I backed out of my parking space just fine and was on my way. I made it out of the automatic gate and down the driveway and then onto Response Rd. by kaiser and was on my way. Then I felt a bump on the driver's side of my car like I ran into the median, but I wasn't sure so I pulled over and turned on my hazards. I couldn't open my drivers' side door so I had to crawl out the passenger side door. Then a construction worker guy came up to me in his orange vest and said I hit him and hit his bobcat. He said there was no damage but showed me the bobcat tire and the scuff marks against it. The tire was tall. I said I didn't see him there. (Turns I didn't) Then all of a sudden one of my directors was on the scene and I don't remember how he got there. I don't remember how all those events transpired that morning. Somehow he moved my car and told me to get into his truck and that we were going to go back to the office and he would get someone to drive me home. We got back to the office and another Manager, named Joe took me home. Scott, the director was asking me all kinds of questions, like about the surroundings, but then he asked me if i partied the night before and if I had any other substance. I don't think he believed me when I told him no.

Came home, finally threw up, crashed and went to sleep until 2 pm. My friend Clay came to get me and drove me to see the doctor. The doctor told me that I simply had a migraine and that they would never be this bad again, that the first one would be the worst. I've never had a migraine before, and I thought they just were bad headaches that sometime made people sick. I didn't know you might not be able to see properly on top of it. so I got a couple of shots in the bum and was sent on my way. Clay took me back to his house, where we waited for Josh and then the 3 of us went to go pick up the car that was left at Kaiser and then josh drove me and the car home and then I went back to sleep. I woke up at 9:30 pm, ate something and then went back to sleep and didn't wake until 6 am this morning.

So I am all better now, only a slight headache. I spent all afternoon/evening cleaning my carpets with a rented rug doctor because I couldn't stand how dirty they were anymore. I feel like I lost a bunch of time and now I feel wide awake. I went to the body shop earlier today. I got an estimate to repair the car $1200. I am not sure when I will get it fixed. I got the guy at the shop to use some took to bend the fender back so that I could open my car door so now I don't really care about getting it fixed right away. It's mostly minor damage. It just makes that sound that Scot and Jen's Corolla makes when you open the p/s door.

So I feel incredibly silly for having a headache and acting out of it like I was on drugs. I can only imagine the stories circling the department at work. I guess I will find out tomorrow...

So, sorry Susie and Jen, now I know what your migraines feel like...