Two Years!!

October was 2 years. I'm amazed how much my life has changed. The first year is a big blur. The second is me trying to get some kind of life back. Will be interesting to see what year #3 has in store.

There are things I do to compensate that I don't notice. I have problems with feeling and dexterity in my fingers so I hold things differently. I didn't realize it until someone pointed it out i.e.: I hold my fork different. And somethings I do notice. I have issues with the right side of my face, similar to my fingers. Sometimes I have issues eating, food just falls out of my mouth (not often!) but the problem I notice most is that my lips don't make a good seal so I occasionally emit a high pitched squeak. I'm told that's it's not really noticeable but it drives me crazy. There are lots of other things but it could be soo much worse. If you don't pay attention you'd never notice there was anything different about me.

My personality has changed in that I'm not as outgoing as I was before. I'm hesitant to talk to people because of the slight lisp, saying the wrong word or sometimes I just pause mid-sentence. It's not like I'm looking for a word, or thinking, but that the hamster just stops running on the wheel.

Most of my friends make of fun of it now, which makes me more comfortable about it all. They know I can't say my ABC's and not to even think about me doing math in my head. If I pause while talking they just pick up what I was going to say and we keep on going. Some friends still expect the "old" me to show up, not understanding that the new me is what they got now. That's the hard part.

OK, didn't mean to write a book. I was just going to do a quick update and it all just came tumbling out.

Happy Anniversary Honey!

Six years ago today I was on a beach in Hawaii getting married.  It was awesome!

Started out flying from RDU to DFW to Hawaii.  Everybody noticed I was carrying my wedding dress and was either telling us congratulations or not do it  :)    Actually everyone was very nice, especially the flight crew.  They took very good care of my dress, hanging it up in their closet and wanted to upgrade us to First Class but all the flights were jam packed full. 

One of Ronnie's friends meet us at the airport with beautiful flower leis.  Seriously, we got leid before get to the hotel! 

Then Mom and Philip flew in to participate in the festivities.

Anyway we got to spend a couple of days of doing nothing but soaking up the sun and drinking fruity drinks with umbrellas.  It was wonderful.  I wish I was there doing the exact same thing right now.

Then the BIG day arrived and it suddenly occurred to me that I'd planned all this over the Internet. I had no idea how this was going to turn out.  I was sure we'd be married at the end but no clue what the limo would be like or the pics/video or the guy that was supposed to marry us. I freaked out.  Thank goodness Mom calmed me down and told me not to worry about it because all that mattered was that we were getting married.

And it was beautiful.  Everything was perfect. And now 6 years later I wouldn't change a thing.  So Happy Anniversary Ronnie and I cannot wait until our 10th anniversary and we go back!

Yeah! < cough, sneeze, cough >

YEAH! There was no storm. 

I got home to a huge pile of mail from Nortel. I put it off for a couple days because I have a cold that makes me feel bad enough, I didn't need anything more.  When I finally started opening mail, the very first letter I opened from Nortel stated that they were NOT going to stop any benefits August 31st in fact to ignore all the other letters because they were no longer valid.   Why?  There was too much push back. 


< cough, sneeze, cough >
I came home with a terrible, horrible cold. It's all Ronnie's fault, he gave it to me. I finally sucked it up and went to the Doctor yesterday. I figured I had a sinus infection or bronchitis or something bad.  He told me I had a horrible cold and gave me some cough syrup with Hydrocodone in it. Forget that codeine stuff cause I got me some Hydrocodone.  Seriously, it gave me a buzz the first time I took it. 

Today I think he's an idiot! I'm worse today than I was yesterday. Still coughing up stuff that is way the wrong color, bloody stuff every time I blow my nose, shitty headache, very congested head & chest, now my chest is hurting and my throat is sore again.  Of course my throat is probably sore from the 2, yes 2, strep test I had yesterday.  Why 2? Because the first one wasn't painful enough.

So do I go to another Doctor, the ER or what?  Why the ER you ask?  It seems when you have a bad headache and a history of brain cancer that Dr's freak and just send you to the ER to be on the safe side.

Anyway, YEAH - cough, cough - I still got benefits that I can use to hopefully get rid of this cold.  (I don't think it's a cold but that's just my opinion, heck I didn't think I had a brain tumor)

Calm before the storm

I've taken the last week off to just relax and not think.  I've spent a lot of time by the pool reading*, chatting with friends, sleeping in and eating whatever I wanted. It has helped and I'm not as stressed as I was.  No more panic attacks. 

I will be going back to reality on Monday.  Hopefully it will all go well.



*I need to better explain reading.  I don't read books like I did before.  I cannot read any books with lots of  people or much of a plot.  I read "The Girl with the Dragon Tattoo" and it took me forever.  I was about to start taking notes on who was who and what they did because I could not remember it or follow. At that point I decided to just read it and try to remember the people and try to enjoy it.  This is a very popular book and everybody is reading it.  It's classified as "summer reading." Yeah, that's right I even have problems with the easy summer reading books.

Screwed!

Yeah I know it's been a while.  Lots of stuff happening, most of it not too good.  Mainly I've been freaking out over this: 

Nortel seeks to cut retiree benefits to 4,000
http://www.reuters.com/article/idUSN2215538920100622

That includes me.  Yes, in a few weeks not only will I stop getting paid but I'll have to start paying for my insurance and meds.  I'll have NO life insurance.  < insert screaming here >

First I got a notification that they were petitioning the court for approval to stop all the benefits.  So I started freaking out.  The court date isn't until July 16th so I thought I had a little time to get everything together.  Nope wrong.  Two days after the notification I got my termination papers. I totally freaked.

Here's all the information.  Nortel is currently in bankruptcy not going for reorganization but going for total liquidation.  They are self insured. All the rules go out the window once you go into bankruptcy.  Being self insured means they are paying my LTD not someone like Aflac.

After consulting with a very good attorney he confirmed that I am in fact screwed.

I knew this day would come but I was under the impression that as long as the "doors" were open that I couldn't get fired.  Well, I was wrong.  Very wrong.

Good News!

Good News! I saw the neurologist yesterday and she confirmed I'm doing great. In fact she commented on the change from when she first meet me to now. How I'd originally showed up hairless with loads of issues and now I had gotten the seizures under control and looked beautiful with hair. She doesn't mind if I take Adderall and I don't have to see her for another 6 months.


Thought I'd give you a little more information on fatigue.  I had 2 doctors appointments yesterday and I was taking pictures at Vacation Bible School (VBS) last night. I got so tired at VBS I had to come home and go to bed. Not like I was doing anything physical, just taking pictures. I slept about 14 hours.

That's how tired I get and how much it takes me to recoup.

FUNNY!

I have not posted anything funny in a while.  I don't think anything funny has really happened lately... until today.

Ronnie and I went out for lunch.  I've turned mostly into a vegetarian.  I will NOT eat anything with bones and am very, very picky about what meat I do eat.  So lots of times I get a salad or something light. 

Today I'm looking over the menu, not very hungry as usual, and having a hard time deciding on what to get.  There were no appetizers or salads catching my attention so I was looking at everything else.  They had a special of portobello mushrooms in an Alfredo sauce over pasta but that sounded too heavy.  The had a mushroom burger and I asked if it was a portobello and how it was cooked.  The waitress told me it was just regular mushrooms but it was good, so I ordered it.

It took forever to get our food.  We started talking about what was taking so long when I food finally arrived.

That's when it hit me!  I had been wondering how they were going to keep all those sautéed mushrooms on the bun and there it was.  A Mushroom Swiss Hamburger! 

I'm looking at it very confused.  I had ordered mushrooms and here is a cheeseburger on my plate.  Ronnie's explaining to me that I had ordered a mushroom BURGER and the waitress is asking if it's OK or did I want something else.  I was just laughing.  I had never occurred to me that the burger part was actually hamburger. DUH!

The waitress came back and said now she understood why I asking about the portobello and from now on she'd explain that it was a mushroom hamburger.  We were all laughing.

At least I can laugh at myself!

Memory...

I've been wanting to post about my memory for a while but just have never gotten around to it.  Well, I figure now is as good as time as ever.

My memory is different now.  I know I touched on short term memory like forgetting what I was going to do but I mean just normal memory.  I generally work on 3 days:  yesterday, today and tomorrow.

I know what I did yesterday, what I have to do today and what's on the calendar for tomorrow.

 Anything past tomorrow is just sometime in the future.  I have very little concept of time passing like an upcoming event getting closer.  I freaked out at Thanksgiving because it was suddenly Thanksgiving and I had stuff to do!  Seriously, I know that Thanksgiving is coming up sometime but then suddenly it's here. It's kind of hard to explain.  Kinda like when you're working and suddenly it's 5 and time to go home.  You have no idea where the time went but it did.  Well, it's like that with days, weeks and months for me.

With the past anything that happened past yesterday, was sometime past yesterday.  It could have happened 2 weeks ago or 2 months ago, I have no clue.  It just wasn't recently.  If it's past the last few weeks, well I have no idea and generally don't think about it anymore. Like high-school, you don't think about it unless something triggers a memory.  OK, everything is like that for me. 

So if you want me to do something, you have to remind me.  A LOT!

Side Effects?

One friend suggested I check the side effects of my medications to find out if any caused kidney stones.  I had not even thought about that.  Cause if they did, this would just be the start! 

So I get on the net and start looking stuff up.  Guess what I found ?  Everything causes WEIGHT GAIN!  Seriously, weight gain. 

And here I was wondering why I wasn't losing weight.  UGH!!!!!


Oh yeah, didn't find anything on kidney stones.

Kidney Stone?

I sort of  missed an update.  Everyone is still asking about what happened with the right side/flank pain? 

Well, I'm pretty sure I passed a kidney stone.  I had a really bad, painful day and that's when it happened.  Let's just say I had all the signs/symptoms and I've not had any pain since.

So there, one less thing to worry about!

ADHD anyone?

Wednesday is the Therapist and/or Psychiatrist day.  I see the Psychiatrist for drugs and the Therapist for talking and working out issues. 

The typical trip to the Psychiatrist is a little chatting and finding out how my drugs are doing.  This time he told me wanted to add another drug to the mix - adderall.  I had heard about it but didn't know much about it.  He explained that it would help me with both my energy level and my focus.  Hey, I'm all about that!

So I got the prescription and off to the pharmacy I go.

I walked back the drop off area and waited a few minutes.  Went ahead and put my Date of Birth on it because they always ask for it.  The lady walks over and starts putting everything in the computer finds me, and I'm out of there.  But she stops me, tells me to hold on for a few minutes.  She's still typing and looking around.

I notice a little girl walking by me.  She's about 10 and looks like she's wearing Pajama pants and a teeshirt.  But these were not just any PJ pants these were MONKEY PANTS!!!!!!  Purple monkey pants to be exact with yellow bananas.

The lady looks up at me and I say:  

ME: "Hey, she's wearing monkey pants!" 
Her:  "Huh?"   
Me:  "She's wearing monkey pants!"
Her:  "What?"
Me:  "The little girl, she's wearing PJ pants with Monkeys and bananas on them"
Her:  "Oh, okay"

I decided at that point it was pointless to explain that I was wearing Monkey socks.

Anyway, I'm still waiting and she finally tells me that Medco requires confirmation from my Doctor as to why I need this medication.  They will have to fax a form to the Dr and he will need to fax it back to Medco.  Once that is done Medco will approve the medication and I can pick it up.

I looked at her and said "lady, I have brain cancer.  I just randomly talked about some little girls monkey pants.  I think I need some ADHD medication"

She starting laughing so hard I thought she'd wet her pants.

I asked if there was anything I needed to do and she told me no.  Just to call back in a day to two to see if had been approved.

Guess what? It was approved the next day!  They said it was the quickest they've ever seen one approved.

Can you read a MRI?

I had my 4 month MRI last Thursday.  MRI day isn't so bad now that I'm taking drugs.  Actually it's kind of fun because I really don't care, I'm relaxed and would like to take a nap.  If the darn machine wasn't so loud I would go to sleep.  Anyway I had the test on Thursday and went back to Duke on Monday.

I have the MRIs at Wake Med so that all the files are in the same location.  That means I get a prescription for the test, schedule it and then show up with the prescription.  The prescription details how they want the information to be returned to the Doctor.  Mostly in CD form which means I know have a copy of every MRI I've had!

This doesn't sound to interesting until you realize there is also a program on the CD so that you can view the pictures from the MRI.  I've become very adept at reading those disc.  It's not too hard.  You can tell all the details, eyes, ears, nose and BRAIN.  You can see where the big freaking whole is where the tumor used to be.  It's easy to spot the portions that are "highlighted" where cells remain.

All that means is that you can look at the MRI from last time and compare to the one from this time and literally see that there have been no changes.  Totally cool.

So when I'm sitting in the office waiting for Dr. Friedman to come up and talk to me after reviewing the MRI, I'm not totally freaking out because I know there hasn't been any changes.

Mom drove me this trip so I had to call Ronnie when I got out.  He wanted to know if I'd Dr. Friedman that I'll already read the MRI and knew I was all good.  I figured he was the expert and let him do the official report!

Frustration Mounts!

The frustration is building because no one can seem to figure out what's going on with me/where this pain is coming from.

I've not heard back from the Dr on the IVP so I went by the hospital and picked up a copy of the report. The final verdict was that I have scoliosis and everything else was normal.

I dropped by the GYN office and he wants to take the wait and see approach. He doesn't think it's cancer or the cyst. It might be endometriosis (which he did a laproscopy on me for years ago and found nothing). He told me if I started puking and running a high temp to call him back. He offered to write me a prescription for pain pills.

So what the hell is this? Not the appendix, gall bladder already removed, Kidneys seem clear, as far as I know all the blood work is clear, no fever, no vomiting, clear CAT scan and Ultrasound other than ovarian cyst, no blood in urine or poop.

What do we have? Pain in the right side/flank/back and nausea/lack of appetite. They can push on my belly and tell I have pain but can't seem to figure out what it is.

I'm just frustrated! I don't want to just take pain pills to cover up the problem.  So I'm stuck in the loop of taking test after test and hoping maybe someone will stumble upon something!

Ultrasounds

Next step after seeing the gastroenterologist was to get an ultrasound. 

Ultrasounds aren't all they are made out to be.  I guess they are cool if you are pregnant and finding out about fun stuff like babies but just in general, they suck. 

So I showed up with a FULL bladder - much  harder than it sounds.  Actually it wasn't that bad, I just started chugging water on the way to Raleigh.  Only took 2 bottles of water and a straw.  I was set.  Didn't have to wait that long but the pushing on the full bladder was NO fun. 

Anyway, the only thing that the technician saw on the ultrasound was a normal-ish sized cyst on my ovary.  Now I'm waiting for the GI Dr to call, give me that result and tell me what to do next.

So still waiting for that call....

Thirsty!

As I stated in the post below, I was really thirsty after sitting in the ER all day.  Every time I asked for something to drink I got the "we have to wait and see what's going on before you have anything" line.  So on the way home, Ronnie got me some tea!

We originally stopped at Wendy's on Capital Blvd for a Large tea and some French Fries.  (I have to eat before I can take my meds)  By the time we got to Durant I had almost finished it.  So the 2nd stop was at McDonald's in Wake Forest.  $1 Large Sweet Tea lasted me until I got home and took my meds.  I drained that big cup with the last Keppra I took. 

I could have had another but at this point I was tired and sleepy and about to P my pants! 

Seeing the GI doc tomorrow morning early.  Hopefully he'll figure something out.  Oh yeah, I'm still drinking sweet tea.

Slacker!

Yes, I know I've been a slacker about posting. I think about what I'm going to post tomorrow every night as I'm going to sleep. I don't think about it again until the next night when I'm going to sleep. That happens with a lot of things actually. So if I haven't called or emailed, I do think about but then don't remember :(

Yesterday was interesting. Starting Sunday I've had pain in my right side, nausea, lost appetite and just not wanting to move. If I get in the right position I'm "OK" but if I get up and move I'd get sick on my stomach and start hurting again. Hey it's hurting sitting here now and I'm sick on my stomach. Well, I can take care of the nausea because I've got good meds from the chemo, so no puking. But all that other stuff I couldn't do anything about. So I did the right thing or so I thought. I headed to the Rex Urgent Care Center yesterday morning. That's the closest to my house.

The Doctor was very nice and did the check pushing on my stomach and it was horrible. It hurt really bad. My symptoms were not YES it's appendicitis or Kidney problems but it was very possible one of them. He asked that I go the hospital and told me I'd probably be admitted.

Since I've had all my stuff done at Wake Med I asked if I could take myself over there instead of REX. He said no problem and they called ahead. Of course I got there and they were clueless. I waited 5 hours in the ER before being seen. I get back there and do all the same pushing and decided the same thing. Could be Kidney or appendix. So they ordered a CT Scan. I get to drink the stuff. Actually they got new constrast stuff and it's just like water and since they hadn't let me have anything all day, I chugged it down.

It takes about about an hour and half for the stuff to get into your system and then you can have the CT. Well about two and hour hours later I get the 5 minute CT. About another hour later we get the results ... it's all clear, no problems!

We talk to the surgeon and he's talked to the radiologist, the ER Dr and his boss. They all agree there is nothing they can do at this point. They refer me to a gastroenterologist and send me home with good pain and nausea meds. So after 12 or 13 hours in the ER they have no idea what's going on.

So here I sit, side still hurting, sick on my stomach waiting for the Doctor to call me back.

And you wonder why I don't update more often :)

A quote

I just stumbled upon this quote and I feel it applies to me perfectly. I'm always trying to figure out what I'm trying to say and never quite getting the word or meaning across. This states it perfectly.

The difference between the right word and the almost right word is the difference between lightning and a lightning bug.
- Mark Twain


That pretty much says it all.

Assignment

Hi, it's me again. I've been pretty slack updating the blog so I'm making an assignment for myself: I'm going to try to update the blog at least once a week. However, I have an assignment for you as well.

One of the issues I have is with the index finger on my right hand. That's the hand I use all the time. Since it's been an issue since the incident I've learned to cope (somewhat) by using my middle finger. Doesn't sound like a big deal does it? Let's leave out that my thumb has issues as well but not as bad. So here's your assignment.

You cannot feel the tip of your index finger. You can feel pressure but you have no sensitivity. You have some feeling in the rest of the finger but not all. This means you have horrible dexterity issues. Now, go open a jar without using that finger. Then you hit the hard part: screw the lid back on. Try writing with a pen too. Try to go the entire day without using that finger. Let me know how you do.

OK that's enough for now. Pea OUT!!

February

We're here: February! Not a big deal really? Just the second month of the year, Valentine's Day, that kinda stuff.

My last visit to the Oncologists, the Medical Oncologist recommended I have Speech Therapy and a whole host of other stuff. The Radiation Oncologist, who I love, recommended I take it easy, take baby steps. She asked when my next appointment was at Duke so we could stagger visits. Since I had seen both oncologist that day she also suggested we do the same with those visits as well. So she asked when I was seeing the other oncologist. My reply? "Febwawary." Without missing a beat, she replied "that's probably why they recommended speech therapy."

So, this is why I don't really like February. If I think and speak really slowly, I can say February correctly. Otherwise I sound like Elmer Fudd. Thank goodness this month only has 28 days.

I'm still here!

I'm still here. You may not realize but normal daily life is tiring to me. Throwing in stuff like Thanksgiving, Christmas, New Years, Birthdays, and a Wedding really tires me out. Maybe now I can take a few days/week and relax! Everybody laughs at me when I say that but it's true. So I just wanted to let everyone in INTERNET land know I was still out here. I'll try to update more regularly now that the Holiday's are over!