Sunday, November 30, 2008

Giving Thanks, The Fourth Edition

I am thankful for my home. I am thankful for the room to enjoy the things we do in life. I am thankful for the ground to some day be able to add horses to our small family. I am thankful that John and I were able to do this together and make our dreams come true. I am thankful for the home that we have built.

Saturday, November 29, 2008

Giving Thanks, The Third Edition

Today I wish to give thanks for my little miracle, my son. Twelve years ago at the age of 17, I never dreamed that the child I carried would be the only I would ever. At one time in my teens, I had declared that I did not want children of my own. I wanted to adopt. As John and I struggled through those early years, my heart longed for a second. However, my sense of money would not allow me to contemplate it until we were easily standing on our own two feet. Unfortunately, when that finally happened, it seemed like one thing after the other stood in our way before we finally gave up on the dream entirely. Therefore, I give a huge thank you for my miracle that I didn't even realize would mean so much to me. I love you, Jazer.

My son is also the most caring and compassionate child I have ever met. He will do anything for you. For instance, when he was younger (2nd or 3rd grade) they would get "school bucks" for doing well and then they would have an auction for little odds and ends. Well, instead of buying something for himself, he bid on some necklaces and a ring... for who else but me. I was almost in tears when I heard what he had done. He is my sweet little angel and I have been truly blessed. I know this past year has not been easy on any of us but for him especially I know it has been rough. He hasn't been able to do things he wanted because of surgery this summer and he has had to adjust to mommy's mood swings quite a bit but he is doing well.

Friday, November 28, 2008

Giving Thanks, The Second Edition

I give thanks for my loving husband, who has stayed by my side and given me the assistance I've needed over the past year. This is proof that he meant it when he said "until death do us part."

I love you, John!!!

Thursday, November 27, 2008

A Season for Giving Thanks

Starting today with Thanksgiving and going on through Christmas, I have decided to do something a little special. Tis the season to be thankful for what we have and I don't want to forget that. Even when going through hard times, we have to remember the blessings that God gives us every day. So without further ado. Here is my first blessing:

Since today is Thanksgiving, I will start with... Thank you for the gathering of family over a wonderful meal that my Mom cooked. Thank you for us being able to celebrate with my Grandma who is a cancer survivor and now in remission for over 10 years. Thank you for giving us this and every day together.

Wishing you a Happy Thanksgiving

thanksgiving  Comments

Wednesday, November 26, 2008

As Hopeful As We Get

I ran non-stop today from 11 AM til present trying to get information to the correct people and make phone calls to those that are supposed to be on top of things. (I say supposed because I've never yet seen it actually happen.) Anyway, after the crazy day, I have the results of my last MRI.

Before I go too far I need to give a little background information. When you have radiation, it kills cells. (Hopefully cancer cells.) Eventually the brain will clean itself up after radiation has completed but it can take a while for this natural process to complete. Cells that are present but dead are called Necrosis. In the case of radiation, it's called Radiation Necrosis. It is not uncommon for radiation necrosis to show itself in MRIs during the first year.

With that said, the results of the MRI were for the most part hopeful. There was a 4X2X4 cm lesion found as well as three smaller areas of enhancement near the tumor bed. (Where they removed my original tumor.) The report stated it could be either radiation necrosis or tumor regrowth. Based the timing of the MRI and the knowledge we have of these things, there is a VERY good chance it is simply Necrosis.

This isn't just me talking. I had the opportunity to speak with my Radiation Oncologist this afternoon and he seemed to feel the odds are great it is necrosis. He basically said that if it was tumor that grew that large that quickly, I wouldn't have been walking in there to hand him the result.

So, for the most part, our prayers have been answered. I haven't talked to my NeuroSurgeon yet but the chances are there will be another MRI in 4-6 weeks to determine what the lesions do.

There's my update for the day. *huggles*

Tuesday, November 25, 2008

Sorry about Lack of Update

Thanks for the prompting, Tonya. I'm sorry I haven't updated everyone on my last MRI. The reason is good, I don't have the results yet. I am going to call them tomorrow morning and I hope they have the results by the end of the day. I will be sure to post and send out an update as soon as I know anything.

I did look at the CD when I got home on Friday but honestly, things just look too much different than the last MRI I saw so I have no idea what might have changed. There are a few spots that peaked my curiosity and concern me but I'm hoping they are simply from radiation. Thus why I need the official report this time and you won't be blessed with my predictions. I can say that I am proud to announce I have managed to discover the plates/screws in my head where they put everything back together. :D

Promise I will update as soon as I know anything. For those wishing to pray for something specific, pray that Dr. Amy is wrong and that the spots she sees is simply dead cells caused from radiation and not tumor regrowth. *Huggles*

Friday, November 21, 2008

The Tell-Tale MRI is Today

Today is my first post-radiation MRI. I'd be lying if I said I wasn't a bit nervous about this one. I have said for some time that I never had a good feeling about doing radiation. Even though logic pointed it as the best next step, my intuition fought me tooth and nail. Unfortunately, my intuition tends to be very accurate. My intuition continues to tell me radiation was not the best option. We may never know but this MRI will give us a pretty good idea.

Honestly, I've reached the point that I don't really care what they find this time. I've been through enough surprises in the last year and a quarter that I'm not sure anything can shock me anymore when it comes to my health. (Actually one thing would shock me and that is if I became pregnant...)

I'm going into this thing this afternoon, excited to be reunited with the MRI team at my local clinic (I love these guys), fighting back my intuition by reminding it that we don't yet have the results so quit bragging, and hoping that everything is working as it should and I get a clean scan.

Thursday, November 20, 2008

Enjoying a Fun Firsts Post

So I totally stole this from Renee, but it looked fun!

1. Who was your FIRST prom date?
My first and only prom date is my husband John. We attended my junior prom together and again senior prom even though I wasn't technically invited. :)

2. Do you still talk to your FIRST love?
No I don't. We parted ways when we broke up and have only spoken a few times since.

3. What was your FIRST alcoholic drink?
I was about 4 and I grabbed my grandpa's glass of whiskey and tea off of the table and took a sip. That was my last drink of alcohol until I was served a "non-virgin" daiquiri on the Spanish Club trip to Mexico before my Senior year. (Needless to say I only took a sip of it before I gagged as well.)

4. What was your FIRST job?
Working at Subway

5. What was your FIRST car?
A 1997 Chevy S10 extended cab in brilliant blue metallic

6. Who was the FIRST person to text you today?
No texts yet today

7. Who is the FIRST person you thought of this morning?

8. Who was your FIRST grade teacher?
Mrs. Jenkins. She was an awesome teacher and I was friends with her daughter.

9. Where did you go on your FIRST ride on an airplane?
Well, I'm not sure if my first plane ride was with my dad's boss or the trip to Arizona.

10. Who was your FIRST best friend and are you still friends with them?
Heather We met on the bus in Kindergarten and we were best friends until I moved. We still kept in contact but eventually you grow apart when you have no way of being together. It's been at least 11 years since we talked but I've seen her parents a few times. She is no longer in state and I'm not real sure how to get in touch with her. Although, I'd love to touch base with her.

11. What was your FIRST sport played?
T-Ball at 5 years of age.

12. Where was your FIRST sleep over?
I think my first official sleep over was at Rita's for her birthday. I think I was 5 or 6.

13. Who was the FIRST person you talked to today?

14. Whose wedding were you in the FIRST time?
Dewayne and Michelle. I believe he is my first cousin once removed or something along those lines. I was their flower girl and I was about three or four. It was a pretty purple dress. I was her baby until she finally had a daughter about 12 years later.

15. What was the FIRST thing you did this morning?
Shut off the alarm and curl back into my warm blanket.

16. What was the FIRST concert you ever went to?
I think it was Tim MacGraw and Little Texas in high school.

17. FIRST tattoo or piercing?
I got my ears pierced when I was around 7 or 8. I don't remember exactly. I would have probably been better off not bothering because the thrill of it wore off way too quickly. I have since let the almost close, did a manual repiercing, and now they are closing again because I haven't had the heart to try to put them in again since they have now been out for five months and I know it's going to hurt to get them back in.

18. FIRST foreign country you went to?
Mexico when I was around 7. We went to Arizona and my Great Aunt and Uncle took us down there shopping.

19. What was your FIRST run in with the law?
Kim and I were about 14 or so and we went down town to the haunted house. We were taking our time going back to the house and we saw a cop down the street. We were out past curfew so we ran to the house before they could catch us. Does that count as a run-in?

20. When was your FIRST detention?
Detention? What's that?

21. What was the FIRST state you lived in?

22. Who was the FIRST person to break your heart?

23. Who was your FIRST roommate?
Andy... my brother... we shared a room for several years when we were kids.

24. Where did you go on your FIRST limo ride?
I don't think I've ever been in a real limo. I lost my chance thanks to a stupid delay in the airport when I was 15...

Wanna try? Consider yourself tagged!
Link back to me and leave a comment here when you post so I can be nosey... Please?!

Friday, November 14, 2008

A Quick Post on Appointments

Ok, after two weeks of trying to get things sorted out, I finally have my upcoming appointments laid out. They are as follows:

November 21 - MRI - 3:15 - Local
December 22 - NeuroSurgeon and Radiation Oncologist - 3:30 - Chicago
December 29 - Eye Doctor (They've all said getting set with one is crucial now) - 8:30 AM - Local
December 29 - Family Doctor - To Be Rescheduled

The most important two are the MRI and NS. The MRI will tell us if we did good or bad with the radiation and whether or not there is any further progress of the tumor. The visit with them NS will determine what my schedule will be here on out. (It could also be the straw that broke the camel's back and my reason to search out another NS... again!!!) TBD

Sunday, November 9, 2008

I'm Asking for Prayers Please

I have two very special people that I am asking you to pray for.

One of them is Coleman Larson. I have written about this special 4 year old a few times previously. They did not receive good news recently as his brain cancer is growing. They are preparing to possibly try an experimental drug to hopefully buy some more time. However, he must raise his platelet levels significantly to qualify. This little boy is an amazing trooper, going through things that most adults would struggle with. Please keep him in your prayers that his platelets raise and he qualifies for the treatment and that the treatment is successful.

The second person is David Welch. David is the author of the 38lemon site that has been a huge source of information and motivation for me. David has declined sharply and his grade four GBM has grown to now cross into both hemispheres of the brain. His family had to call in hospice for him. He's an amazing man with true strength and determination. I feared things were not well when he made his last entry on October 30. His brother was kind enough to put in an update for all of us yesterday. Please pray for David's peaceful journey to heaven.

Saturday, November 1, 2008

The Week in Review 11-1-2008

Summary of this week: I'm a little behind on updates...

  • We're almost 21 weeks (and 9 days shy of 5 months) past the partial resection of my brain tumor.
  • We're 4 weeks past the completion of 6 weeks of radiation.
Medically - On Thursday, I had my first follow-up with my Radiation Oncologist. He was very pleased with my progress and felt that I was well ahead of the curve when it came to recovery. I asked him some questions that had been on my mind and he assured me that it is all normal. He told me that neurologically I'm as sound as anyone and probably more sound than he is. LOL His only real concern was the extensive "scabbing" that was still on the top of my head. He told me that he wanted that off as quickly as I was able to manage. How was that to be done? Baby oil. The nurse told me to put baby oil on my head and let it set for 30 mins or so then wipe it off with a soft wash cloth. It all came off just that easily that very afternoon. Therefore, my head is no longer disgusting to look at. :)

He told me that I can go back to working full time with my NeuroSurgeon now for arranging treatments and that he didn't need to see me until February. So I've been dismissed.

I need to send a message to my NS next week to schedule my MRI. We are going to do a head/neck one because I have been having a lot of problems with my neck again and we want to check on the hemangioma that is in my C3 vertebra. I suspect there will be more neck MRIs in the future since we now know that my brain tumor is malignant. We will need to watch it to make sure it's not a Met. He said there is very little chance of it but my case hasn't exactly gone off without some surprises. I'll know more soon.

Emotionally - My therapist is watching my emotions very closely right now. I had a few bad weeks in there with a combination of my Seasonal Depression, fighting my son, and just feeling a bit down. I think both of us have a primary concern of my reactions as we get closer to the post-radiation MRI. As much as I try to fight the feeling, my intuition still sits there and tells me that I should not have done radiation yet. Therefore if the MRI does not show the results we hope, I could be in for a rough few days fighting with my own mind. However, I'm strong and I am sure I will overcome it just like I have everything else to date.

John also had to play to my emotions this week as well. One of the reasons that I started therapy over a year ago was because of anxiety that is induced by medical situations occurring with John. It's a stupid anxiety but it was really taking it's toll on me and I was unable to control it. Well, he messed up his back... again and has had to visit the chiropractor. There was some concern he might have done more damage than just knocked it out of place a little bit. Luckily he didn't and it's just in need of some adjustments but it was enough to give me a bit of an anxiety attack. It came off more in anger for him not listening to me to go to the chiro before harvest and more anger because he didn't ask any questions of the chiro but I was able to use some techniques I've been taught to control most of it.

Mentally - Last week my therapist and I actually tested my short term memory to see if the memory loss is legit or all in my head. It is indeed testing lower than it had prior to surgery and even before radiation. The RO says it could take six months for that to stabilize so I now know what to expect. My therapist and I also believe that it could be less short term memory and more my continued inability to focus as I used to. I guess time will tell.

Physically - I could feel actual progress in energy this week. I made it quite easily full-time through Wednesday despite the horribly cold working conditions at work right now that left me with headaches. I ended up taking a sick day on Thursday to recover and even out the fact I didn't get to sleep until after midnight on Wednesday because of a headache that would just not go away. I felt pretty good Friday despite doing A LOT of moving around during the day. I was tired by the end of it but wouldn't have been able to do as much as I did the previous week.

My head hurts less now with the burns and now that the "cradle cap" is gone my head feels much better. It actually feels like it's healing now. Thanks to working in 65 and below temps mon-wed at work, I have also got a pretty good idea of where they removed the skull to get into my head. Sad to say but the "hit by a hatchet" feeling makes it pretty accurate.

I have also been dealing with some aches beyond the headaches from the cold. It is in my neck/lower skull/ear area and I believe I may have managed to crack another tooth. I'm trying to hold out until after the holidays but I don't know if it will work or not. (I have a dentist appointment already scheduled for the week after Christmas.) I've already had to have one tooth pulled this year from cracking it. I would like to get a little more healed from radiation before I go for the second...

Family/Work/Play - As stated, the working conditions at work thanks to an old building and down boiler is quite uncomfortable. It forces me to wear a cap all day and my head doesn't like that very much. It's the pits when you have to make a choice between feeling like a hatchet went into your head from the cold or feeling like your brain is being compressed from a cap. Even with the cap my head still tends to freeze. I suspect I will have to work things out at some point to make sure I don't let my head get too cold. Hopefully they will get it fixed soon.

John is still busy with harvest although not as bad as it was. I suspect it will still be going on close to Thanksgiving. He's already said he is taking a four day weekend that weekend regardless of what is going on. I can't blame him. (Four days alone with John and JJ... I haven't done that since surgery... is this a good thing or bad? LOL)

I have some fun things planned today. My son and I are going to visit some friends at a local "kiddie place". I will sit around and talk and he will enjoy everything from games to go karts to laser tag. Then we have a get-together at my mom's this afternoon and I am hoping to go to dance tonight. Not sure I'm going to be able to dance as much as last time but I'd love to get into a few dances at least.

Halloween was last night. My son is "too old" for trick-or-treating or so he said up until 3:30 yesterday afternoon. He wanted to go out with a bunch of pre-teen boys and we ended up butting heads because he couldn't tell me who was supervising. He didn't get to go because of yelling at me because I wouldn't just let him go. He's over it this morning but regardless. Halloween is my favorite holiday and I didn't even post a happy Halloween on my blog. Sorry about that. I also didn't decorate this year but I blame it on energy and lack of ambition this year. Next year I will be back to my old self. I actually decorate more for Halloween than Christmas.

However, I did utilize what I have to make my halloween costume. Introducing the Deranged Brain Patient:



The pictures didn't turn out as well as I'd hoped but basically those are not real staples or bruising on my head (the scar is real) and I have a black eye that actually fooled a few people at work yesterday. Not bad for a few minutes of work with makeup. I actually did the black eye over my lunch hour. LOL

Oh, back to work. I have now completed my second week of full-time work. (Although I haven't actually made the full week yet. Last week I had to take a half day vacation and this week I took a sick day because I just couldn't go any further without taking the chance of dropping myself a little further than I should run myself.

Ok, I guess I better wrap this up. Unfortunately, I've got a ton to fill in on still but I'm not going to do it in one post. Hopefully I'll get the spark this week to write my other entries...