Well, the last day of 2007 is almost half over now. Tonight John, our son, and I will ring in the new year with our square dancing friends in a huge New Year celebration. We did it last year and had an absolute blast. I can't wait to do it again this year.
Part of me is happy to see 2007 go away but part of me is scared to see what 2008 may bring. There has been many times when i say to myself that "things can only go up next year" only to be proven wrong. I no longer assume that anything can be the bottom of the line. Things can always get worse. This is not a pessimistic outlook on life, rather it is my coping mechanism. By being able to smile through the lowest points of my life, I know that I can keep positive and smile through the next year, be they better or worse than the previous year. That's the secret of life... smile even when you don't feel like doing it.
So here is a big cheers to the end of 2007 and all the obstacles that stood in my way this year. I smiled through them all and now it's time to start a clean slate in 2008 and smile through whatever may come my way. Regardless of what crosses I must bear this year, I will come through on top, with my spirits in tack, and my future in hand.
Monday, December 31, 2007
Well, the last day of 2007 is almost half over now. Tonight John, our son, and I will ring in the new year with our square dancing friends in a huge New Year celebration. We did it last year and had an absolute blast. I can't wait to do it again this year.
Sunday, December 30, 2007
2007 has been a year that will stick in my mind forever. What a change 12 months can make.
At the beginning of 2007, I was nervous about the fact we were working on our 12 month anniversary of trying to conceive. We would be starting infertility testing soon and the thought of finding something wrong with one or both of us terrified me. Especially if it was John. We would later find out that there was some low numbers in the male perspective but not bad enough to prevent us from conceiving. Our journey was not to end and we would continue through the summer.
After putting our lives on hold for over a year because of trying to conceive, we decided it was time to start living for what we do have. For the first time in 10 years of marriage, we began enjoying life. We spent many hours enjoying dance, allowed our son to enjoy a summer long camp, bought season passes to Six Flags, became soccer parents, and took every chance we could to to enjoy the small things of life.
In June, the stress of trying to conceive and anxiety over medical procedures related to it, prompted me to seek the guidance of a councilor to help me through it. Little would I know that this action would take on a whole new meaning in the months to come.
In August, our lives changed forever. The anxiety of the summer was no longer of importance, it was replaced by what our future would hold. Everything prior to August 22nd seems like a dream. It's like it was a different world and a different life. I've feared losing myself as who I am, every since the diagnosis. However, I now realize that I did lose myself that day. I am no longer the person I was. I am now stronger, less childish, and more dedicated to enjoying every second of every day. I no longer let the little things bother me and instead realize that it all goes together to make my life.
The anxiety over medical procedures and infertility seems so little compared to the anxiety we now face over possible surgery and its risks. I will probably continue to grieve over the loss of our second child who would never become a reality but I know that to continue the journey would be detrimental to my own health.
I have many more days to embrace in 2008 and beyond. I will hold them close to my heart. Even more so than the days we spent this summer enjoying life. If it is possible, I think I am stronger, more mature, and wiser than I was a year ago. I value the love my husband and I share even more and I cherish the miracle that we brought into the world 10 years ago with everything in my heart.
So there is my quick review of 2007. It was an emotional and trying year but cheers to 2008 and a much better and less trying year ahead. May 2008 find you all happy, healthy, and loved.
Saturday, December 29, 2007
I have a little background in this entry as well as some of my current outlook on what is going on right now. I hope this helps you understand my mindset and perhaps a bit more about me. Especially those that don't know me personally.
I am not a religious person. I do not attend church. There I said it. So what am I and how now, when I'm going through the toughest time of my life, can I still not accept the church? I believe in a God. I believe in a higher being that has some control over our lives. I believe in an afterlife, be it Heaven or otherwise. I do not believe that the bible is all encompassing. I do not believe that any one religion has the full story. I do believe that God is an understanding God and when it comes to people like me, he would rather me live a good life then to not and attend church every Sunday. My view on this is simple. If God will not accept me into "Heaven" because I have not declared a religion and gone to church as I should even though I have lived a good life of love for everyone around me, then he is no God I wish to worship anyway. I'm sure there will be people flame me now that I've actually written the above paragraph but the day I find a religion and church that is of my beliefs, is the day I will start attending church. In the meantime, I will continue to follow the "Church of Amy" and worship and talk to God in my way.
Ok, background is now over. Now to the meat of the subject. Back in October I wrote about an "Argument with God". At the conclusion of that argument, God and I made an agreement that he would give me the sign of when I need to move to the next step and that he would make it apparent. I have the faith that God will keep his word on this and will give me the sign when the time is right. Therefore, the latest MRI, all the doctors opinions, all the battles before me right this instant is simply a test of my faith. The ultimate test of whether or not I trust him enough to wait for the sign. I do trust him. I trust him with my life and my family's welfare. This is why, even if there continues to be massive change in the tumor, I will sit and wait.
This entry is more just something I need to get out in the open and off my chest than anything else. I hope that forgiveness can be given by those I've angered, support can be given by those that disagree, and faith can be strengthened by those that agree. I hope that I am able to change the focus of my entries some and speak more along open lines. I sought out to do that from the beginning but a realization made me tone it down a bit. I can't do that anymore. "I need to say what needs sayingbecause we are only here for a little while." - Billy Dean
Friday, December 28, 2007
I'm enjoying my vacation doing only what is necessary and enjoying my family this week.
Medically - Well, the results of the last MRI were not what we had hoped but from my view they could have been worse. I am not holding much if any faith in this last MRI. There are so many factors that could have made it look different and therefore I'm not getting uptight about it. What are those factors? Sinus Pressure, change in MRI coil, and roller coasters. I obviously won't be riding roller coasters in the next two months so that will not be a factor in the next MRI. The coil will probably not be changed again before my next MRI. Last but not least, if anything the Sinus Pressure will go down so hopefully that will also be a non-issue. Therefore, the next MRI should be the tell tale on what is going on right now inside my head. We'll find out soon enough.
I just want to address something here about the sinus pressure. Someone asked me how I know for sure that it is sinus pressure and not caused from change within my head. Well, I don't know for sure but I have gotten sinus infections my entire life. They routinely go from allergies, to sinus pressure, to sinus infections, to bronchitis. This is the routine I've lived my entire life. This year is no different. Just because now I know I have a brain tumor, doesn't mean every little thing that occurs is caused from it. I mean a sinus infection wouldn't turn into bronchitis if it was only pressure caused from my tumor. It wouldn't respond to antibiotics if it was caused from my tumor. Why would it get so stuffed I can't breathe if it was from my tumor? So you see, I feel that I have a right to get a sinus infection/sinus pressure just like everyone else in my climate currently has. So yes, it is sinus pressure and will remain that way. Just like the headaches I had last week was stress and will remain there. I don't know of many people that don't get headaches right before the holidays and I am no different. Ok, off my soap box.
Emotionally - As much as I say I didn't let the last results upset me, I did have some problems with it earlier in the week. The very thing I hoped would never occur did and that is that I continue to have no symptoms but there is minor change. Emotionally, I'm still set that if I'm not having symptoms, my brain is handling things just fine. This thing could possibly grow another two or three CM and not give me any problems. As I joked with John yesterday, as long as there is more brain than tumor I think I'll just keep watching it. *smile*
Mentally - Again I can't say that I've made much progress. I did get the house to a point I would be comfortable if something were to happen. I have a lot of work to do in some areas that have been let go way to long but that will come with time. I really need to work on some paper stuff in the next few days but the MRI kinda put it on the back burner in my mind. I will just have to continue to work on things when my mind is capable of grasping it.
Physically - Other than being exhausted from the sinus pressure and the start of my traditional bronchitis, I've felt really good this week. I do think I overdid it for Christmas but it was soooooo worth it!!! I am hoping to be able to do it again next year. *smile* The trigeminal pain and numbness has been at an all-time low this week and I am really hoping that it is on the verge of complete healing. Speaking of which, I need to give my neurologist a call about my Gabapentin. I'm almost out and although it is doing much better, I don't want to be left without it if I do need it. I want to talk to him about how to properly wean it down as well. The only other thing worth mentioning is a bit of neck pain again today but I think it is mostly because I've been staring at a laptop or nintendo DS screen way to much and the set up isn't exactly ergonomic. I really need to behave in this area or I'll have to go in the chiropractor again.
Family - John is healing nicely from his vasectomy and is pretty much back to normal even though he still isn't supposed to lift yet. He and I got into a bit of a tiff earlier today over something I should have never brought up but I just felt it needed said. Oh well, occasional fights are good for the relationship. We have enjoyed the week otherwise taking lots of time to curl up, talk, and just enjoy each other. That's what I love about not having any obligations this week. We can just take time to be a family. Even if a lot of that time is spent rooting each other on in some video game. :)
Our son is doing well and he's enjoying the time off. His bronchitis is improving a lot and I'm hoping it will be entirely gone by the time school starts back up. He got lots of new toys that he has enjoyed putting together with his dad. I swear, sometimes I wonder if I put the right tag on the toys or not.
Play - Well, we all got new games that we've been enjoying. I truly love "brain games" and enjoy proving to myself that there is nothing wrong with my brain. I have always considered myself on the smart side and often wondered if the knowledge I have a tumor would unconsciously change that but I am happy to say I am just as smart as I have always been. However smart that is. *smile* Our son also got "Guitar Hero" for Christmas. I must say that has been a lot of fun. I have now beat the easy level but I am struggling with the next level. I think I'd be better off with a left handed guitar because I just don't have the strength in my left pinkie to hit the fourth color. I'll have to play and see if the guitar can be swapped around. Of course, that would mean relearning how to play with the opposite hands but we will see.
I can't think of anything else worth mentioning this week. I will hopefully get some things done the remainder of the week in my "preparations" and do a quick post Christmas clean of my house but beyond that it will just be casual living and doing whatever we feel like doing... or not doing. On New Years Eve we will have our big New Years dance. I can't wait to get back out on the floor. It has been at least a month since we danced because snow and Christmas parties kept us from the ones in December.
Thursday, December 27, 2007
Last night and again this morning I had some time to sit back and think about the things that are sitting before me. As I said last night, the fact I have a brain tumor is my cross to bear and is the weight I must carry. I have said many times and have even had a doctor tell me, there is no correct path in this situation. I am moving along a road and I can see a fork somewhere up ahead and one or both of the roads can be the right road as easily as one or both of the roads can be the wrong road. In my life, I have always been one to go against the odds. My husband and I were young lovers who have seen the odds and spit on them. All the many things in life I have defeated the odds. This isn't to say this will be one of them, but when the world says they would go in here and listen to the doctors... I will take the path less traveled. I hope this makes sense because I'm just typing and not really paying much attention. This is completely from my heart. I guess that I am just seeing the two roads up ahead very clearly with the two decisions clearly defined. One road is surgery and is a well worn path. The other road is to continue to watch and has grass to my knees. I enjoy walking through grass. I think, for now, that is the path I will continue on.
Here's another way of looking at it. It's a little comparison that clicked in my head some time yesterday. You are a healthy, young athlete that suffered a sport related injury to your leg. The doctor requests an MRI. In the MRI, they detect that your knees are badly disintegrating and you will need knee replacement surgery. They want to do this surgery now, even though you are young and healthy with no problems with your knee. Would you let them do it? Of course you wouldn't. If you are having problems with your knee, surgery wouldn't be a second thought because the only place it could go is up. However, when you are healthy the only place it can go is down. No matter how you look at it, a knee replacement can NOT become an upgrade due to various factors. At least not when your knees are not giving you problems.
Well, now you look at my situation. I am healthy and young and value the very essence of my mind and personality. As seen by the games I mentioned yesterday, there is nothing wrong with my mind. Without any obvious outward signs, something has been found in my head that they say needs to come out or at least be evaluated so that a treatment can be determined. Why would I want them going in there when again, the only possible outcome is a downgrade? I don't care how good the doctor is. I don't care how amazing technology is. You do NOT go into a person's head without causing a downgrade of some kind. Sure, maybe it would be so minimal that I wouldn't even notice but even one minor mental decrease is a downgrade.
Now look at the two scenarios I laid out. They are telling you that your knee is going to start giving you problems. You understand that. However, in the long term you will be able to live better not doing this right now but rather waiting. The same goes for my scenario. As long as I am not having any problems, I can live better prior to surgery than after having it. I don't care what anyone says, once I agree to surgery, nothing will ever be the same and every little minor thing will have them either wanting to go back in or changing my life with other treatment. There is a time when the tough decision to wait needs to be made. I could still be 20 years from this thing causing me symptoms, just like the knee could be 20 years from breaking down to the point it lowers your life abilities. Why would you trade in those 20 years now?
Wednesday, December 26, 2007
I hope everyone had a fabulous Christmas and made many special memories. I had a very nice Christmas. Now that Christmas is over, I am thinking towards the future. It would be very easy to get into a funk of "why me" right now, but I'm not going to let myself do that. I have many things going through my mind, but by remembering that we all have our own crosses to bear and tests to live through, I am able to look at the future with a bright tone.
I received a call from my NeuroSurgeons Chief Resident today to give me the results of my EEG and MRI. They were what I've already gotten so there were no surprises there. He, of course, is standing by his feeling that I should have the open biopsy and probably sooner than later. I stand by my feeling that if I should decide on it, it will be come June and no sooner if possible. Furthermore, I've basically decided that if I do choose to do this, I'd rather them go in with the intention to remove the tumor rather than just the biopsy. They are only going in once so they might as well get it all the first time. I feel he will not be agreeable to this. At which time I go with plan B which is the second opinion doctor I saw who wanted to do surgery in the first place. I was taken enough by him that I have no problems going to him if that's what it takes.
As I said, we all have our crosses to bear. Mine just happens to affect the very essence of who I am. This thing may possibly be changing. Is it change? Is it the fact that they changed coils? Is it pressure from my ongoing sinus infection causing the "change"? Is it the fact I road some roller coasters two months ago? No one really has the answers to these questions. This is why I'd like to see another MRI before coming to a decision. Who knows, this thing could go the reverse in the next MRI and if I did something now, no one will ever know that miracle occurred. :)
It's still difficult for me to consider doing something when I am sitting here as normal as can be. My brain is perfect. For Christmas, I received some Nintendo DS games that are along the lines of what I love to do. "Brain Age", "Flash Focus", and "Big Brain Academy" are the games in question. I love playing these types of things. Interestingly enough I score very well on all of these even getting platinum medals in Big Brain and 30 and below in the others. I realize without knowing the game, it's impossible to understand what these mean but trust me when I say these are not scores that someone with brain damage is going to get. Therefore, yes I have a tumor in my brain but no I don't think it's worth going after right now. I value being able to do that kind of thing and kick butt at it, losing that would be horrible, especially if it was when we were trying to prevent that from happening. *sigh*
I wish God would hurry up and let me in on a bit more of this puzzle. He's promised me to give me obvious signs when it is time to take the next step. In the meantime, I just need to continue studying for this test and trudge up the hill bearing my cross. I am waiting for his sign and then I will take the steps necessary to keep me healthy as long as possible.
Sunday, December 23, 2007
Caution Vent, read at your own risk.
Don't get me wrong in this vent because I have a good life and I wouldn't trade any of it for all the money in the world. Although I am mad at him right now, John is one of those hubbys that do help around the house and I shouldn't be complaining. It's just unfortunate the places he likes to help isn't what I NEED but rather what he feels like doing. I'm sitting here right now eating my breakfast and decided, unless I want to spend the whole day pissed off, I'd better write in my blog while I have the chance.
In preparation for Christmas, I haven't gotten everything I want done, but I'm getting to the point that it's manageable and knocked some things off the list that don't really matter. (Who cares if my computer room is still a disaster? I can't exactly do it without my shelving and John was unable to finish that before his surgery and he's out of commission for putting them up now.) All areas except the Great Room and Kitchen are finished. I have cleaned the Great Room at least a dozen times but you would never know it now. (I have decided to just do it right before company gets here tonight and again Tuesday morning after we open our own presents. Then it has a fighting chance.) I realize John had surgery three days ago but sitting around playing video games and laughing at the TV is not helping my motivation. I should give credit where it is due, he did start a project last night when the leak in my sink that has been unfixed for months finally pushed me over the edge. However, he didn't finish it and now I have all the items that are normally under my sink all over my kitchen floor waiting for a home.
As if that wasn't enough, my son woke up this morning coughing his head off. It looks like he's come down with bronchitis. Nothing new, he or I are usually down with it for Christmas. So John is on his way to town with him to take him to prompt care. However, not before pissing me off even more with his comment, "You owe me one for this," after I asked him to take him. Just what is it that I owe you for?!?!?! Taking YOUR son to the doctor??? He acts like it is such a huge inconvenience for him. Sorry that it's cutting into your game time!!! It's like he is the only one who's Sunday plans are screwed up. I wanted him to finish my dang sink. Instead, I was under there before breakfast sanding down the sink and setting up a heater. Like I don't have other things I need to be doing. To top it off, we have had a rogue mouse going through my cabinet drawers, so guess what all needs to be taken out and cleaned today? Yep all of my silverware, cooking utensils, etc. I need to be getting things prepared to cook. I need to be cleaning out my fridge to put stuff in. I need to be doing a quick sweep of the kitchen. I haven't wrapped a single present yet. All this and my mom, dad, and brother are coming over for Christmas tonight. I'm not busy at all though. (Note the obvious sarcasm)
I asked him before he had surgery to clean my ceiling fans for me. Still not done. I asked him to finish the edge in my bathroom. Still not done. I asked him to take a paneling sheet out to the garage. Still not done. I'm not real surprised. He has to do things like this on his own schedule not mine but I don't have the three years to wait for it to get done. oh well. I will still get my ceiling fans cleaned if I have to do them myself.
It always seems like it is one thing going wrong after the other when you are preparing for holidays. I could go on and on about things to vent today but I've finished my breakfast now and I've got a ton I still need to do so I better wrap this up and get work done while the boys are gone. At least with them gone for the next hour I can work on my kitchen without John wanting "lovins" all morning. As if it wasn't bad enough that he didn't want to cuddle with me last night when I was a little stressed out, he's been all over me all morning. UGH. Sorry it's a two way street here.
All I know is I hope I'm a very long way from surgery otherwise this house will likely fall apart while I am down. *Sigh* If I don't get back, Merry Christmas.
Friday, December 21, 2007
Ok, shortly after I finished up my last week in review, I received a call from my doctor with the results of my MRI. For the most part they are unremarkable and everything appears to be "normal" for me. :)
There was some slight noted change but due to there being a new coil, fighting a sinus infection, and it being nothing significant, it will not convince me to take quicker action as of now. If this type of report continues, I may reconsider June as full resection instead of biopsy but we'll worry about that later.
Therefore, no change in plans at this time. Just wanted to give you all the update.
This week has been a true test of my strength in every which way.
Medically - I had my MRI on Tuesday and had to deal with a small FUBAR with it on Monday so that it actually took place. I despise dealing with all the areas of doctors and insurance.
I received the EEG results and they were very positive. There is no signs of seizures and that is a very good sign.
I am still awaiting the official results of the MRI. At this point, I probably won't receive them until after the holidays.
Not related to me, John has his Vasectomy this week and it went well and he's in very little pain so far but we are aggravated they did not do the no scalpel vasectomy like we thought they were going to. I kick myself for not asking a couple of questions that could have possibly changed that but you can't change what is already done.
Emotionally - Emotionally this has been a tough week. Not only did we have issues at the doctor with John's vasectomy but some minor issues with my MRI caused me to be much more uptight than I like going into it on Tuesday. Furthermore, I was hoping to get the official results on it before the holiday but it doesn't look like that is going to happen.
Mentally - I haven't made any further progress at this time. I'm too busy getting ready for Christmas to worry about the future right now. Maybe next week I'll have more information.
Physically - This was a good week in terms of trigeminal numbness. It feels really good this week and if it keeps up at this pace I look for it to be completely healed by my birthday. I'm really excited about being able to feel my mouth again!!!
Not other news physically other than I've been going like a mad woman and therefore near exhausted and I can't rest yet. Soon enough.
Family - Nothing I haven't already mentioned. John is doing ok with the pain from his vasectomy and I look for him to be back to a "no lift" normal by Sunday. My son has been doing well and is enjoying his vacation.
Play - Nothing really new here.
Sorry that I don't really have much. Take care everyone and have a very Merry Christmas, Happy Hanukkah, and Happy Holidays.
Thursday, December 20, 2007
Well, John's Vasectomy is officially over and I'm am ticked off. First off, I'll say that I'm more upset about this than he is. Why? I hate to see others in pain. I'll take all the pain in the world but I hate to see those around me even in minor pain. Thus why I am ticked off about the revelation I will tell you about.
John's vasectomy was supposed to be done with the "no-scalpel" technique. From what I've read about this technique, it is one "incision" instead of two, there are no stitches, and recovery time is quicker. This is the technique that we had agreed on because of the nature of what he does and the fact I didn't want to see him in a ton of pain. Well, once it got started and before I could say anything, we found out that it was the old-fashioned method instead. Before it was over, I was close to tears. I really would have gone back to my former method of birth control (IUD) had I known it would be traditional. I realize that many guys before him has gone through traditional and are just fine but I hate it. So now I am sitting here, quietly fuming and trying to hold my anxiety to a minimum. He is just fine with it. Yes he realizes he will be sorer but he is ok with it. Why am I the one that gets so upset and annoyed with something like this? It's not my body. *sigh* Sometimes I'm just to damn compassionate for my own good.
Well, I'm not sure I'm ready to describe the procedure yet so it will give me something to write about next week. I will try to do my week in review tomorrow but after that I probably won't be back until after Christmas. We'll see how it works. I have a ton to do and now I won't have John even helping me a little bit so...
Oh and I still don't have my MRI results...
Wednesday, December 19, 2007
Well, I just got off the phone with the nurse and they still don't have the radiology report from my MRI. I hate waiting around to know whether everything is good or not. Especially since they changed things on me and therefore I can't tell. At least last time I was able to pull up the exact same scans and see that there was absolutely no change. I'm not sure which two scans are the same under this new system.
Anyway, we got our car back yesterday. Of course it wouldn't act up for them but they did replace the switch so hopefully it won't do it again. I really hope not anyway. Dang lemon anyway.
Well, it's just a short shout out. Tomorrow is John's snip so I probably won't write until late and I don't yet know what the weekend will bring because I will be busy with getting ready for Christmas. I will keep you as posted as possible.
Tuesday, December 18, 2007
...and I don't play one on TV, therefore I am choosing not to comment on my MRI results until I get the official radiology report. How's that for being very ornery of me?
I will vent a bit about my MRI and I will give you some results from my EEG, however. What do you want first, the good news or the bad? Oh? Really? Ok then I guess I'll give the bad news first. The have changed the way they do MRIs at the clinic I get them at. No longer can I get by with them injecting the contrast with a simple shot. Oh no, that was to easy. Now they actually put an IV line in to do it. (Have I ever mentioned I hate IVs?) It's a change of policy. Apparently they had someone have an allergic reaction to the contrast and they had problems finding a vein to inject medication into. Therefore, they've started leaving it in while there is no problem so that they don't hit it again. (Have I ever mentioned that I hate IVs?) What's this mean? Instead of a minor puncture wound that is tender for a few hours, I now get a huge puncture wound that hurts for days. (Have I ever mentioned that I hate IVs?) Furthermore, this thing has to remain in through the entire latter half of the test totaling about 15 minutes. Do you know how lousy this is for someone that doesn't like IVs? Having to lay completely still for 15 minutes with this thing sticking in your arm. Oh and to top it off, I hate IVs. Have I ever mentioned that before?
Ok, I also received the results of my EEG today. Great news, no seizures. As a matter of fact they didn't notice any change over the area that is my tumor either. I guess that typically this is considered a "dead" area and doesn't show any activity at all or something along those lines. Mine shows no change in comparison and my activity was constant with no fluctuations. This is really good news although I'm not sure what the "no change over tumor" means other than to confuse me even more.
Ok, I guess that about sums it up. I promise, as soon as I get the radiology report from the doctor, I will let you know the results of the MRI. All I will say until then is that they changed some coils in the MRI machine and therefore it is near impossible to tell if there is any change or not by comparing the two scans. Because I don't understand what might have changed with the machine, I'm not making any guesses on it. Talk to you all soon.
Monday, December 17, 2007
That says it all. I think today has been wild enough for an entire week and it is only 1 PM. I am very glad that I only have 1.5 more days left of this week. (Well at work anyway. I have other things to do the remainder of the week so it's not completely over.)
It looks like my MRI has been postponed for a few hours tomorrow. It's a very long story and I won't bore you with the details but let's just say I hate insurance companies.
Well, sorry this is short but it's been one of those days and it's not close to stopping. Take care and if you are in areas with snow, drive safe.
Sunday, December 16, 2007
It's beautiful outside this morning. I was going to take some pics and post them but the battery on my camera says that it is exhausted (it's words not mine) so they will have to wait until a bit later today because my unexhausted battery has decided to disappear. At some point I will post some just can't promise when.
Anyway, last night we got at least 6 inches of snow and possibly more. It's hard to tell the exact amount because there has been considerable wind and therefore A LOT of drifting so in some places it looks like about 20 inches and others it looks like 2. Gotta love the wind!!!
John had his Christmas party last night and they cut it short because of the weather. It was still not bad. A huge free meal so not much more to complain about. I will write more about it another time. Unfortunately, the snow is playing with my internet connection (I have satellite) and I'm not sure how much longer it will hold out so I'm going to wrap this up. I hope everyone is staying warm. *Huggles*
Friday, December 14, 2007
Another week has come and gone and I still haven't started my Christmas shopping!!! This is so unlike me because usually I'm done by the first. Oh well, here's the update for the week.
Medically - I still haven't received the results on the EEG. If I haven't heard from them on Monday, I will give them a call to see what the status is. I need to call them anyway to determine what we will do with the Gabapentin. My refills expire in a few weeks and I think I should probably stay on it just to ward off any possible pain with the trigeminal.
After lots of headache, I finally got my MRI scheduled for Tuesday. I'm just ready to get the tests done for the year! I did my bloodwork for it on Tuesday so I am all prepared for it.
After that is done, the only medical things left for the year will be John's Vasectomy.
Emotionally - This week was a bit rougher emotionally but I'm not to worried about it. It seems I was just a bit more vocal this week than normal and felt the urge to talk about my issues. Perhaps it is the "Pre MRI" jitters that some of my support group talks about. My intuition tells me that this MRI will show something different, I'm just not sure if that different will be on the good or bad side. I'm hoping that it's on the good in that the questionable area has receded thus indicating that it is indeed swelling and not tumor. Only time will tell. Other than that, I think I was a bit cranky this week but that's for John to be the truest judge. :)
I'm sure that car issues did not help me emotionally this week so I'm not going to put too much weight on anything that occurred. We'll see how next week goes.
Mentally - I haven't really done much this week to prepare for the future. It was maybe a week off. I did get a lot of work done last weekend on the house finishing up some loose ends and working on some decluttering. I have a lot of fun projects that I can begin after the holiday. Beyond that, nothing is really new there.
Physically - The sinus pressure has not decided to leave me yet and honestly I don't expect it to until spring. This is the typical routine for me. I guess this is one of the reasons I feel there will be a change in the MRI. This time of year always gives me head changes so I'm guessing it will be reflected in the MRI.
Other than that my neck gave me fits Wednesday and yesterday and I went for the followup with my chiropractor. It feels better today although I've noticed a bit of a twitch in my left eye again today. It seems to appear when my neck is bothering me. I will watch it.
My trigeminal has felt great this week. It is still a bit numb but overall I would say it is at 85-90% so I am very excited about that.
Family - Well, my son had another incident Wednesday at school but for the most part it was a much better week. I am hoping we're back on top of it. John continues to count down the time to the snip. Otherwise, I haven't really seen anyone so I can't comment.
Play - Nothing really new here. We continue to fall for TribalWars and spend time on Puzzle Pirates. However, we did play risk over the weekend and had a good time with that.
Other - Our lemon on wheels is giving us fits again. I swear they could not pay me enough to drive another Saturn. The alarm goes off when no one is around it, the doors lock on their own, and the headlamp comes on even when the doors are shut and the switch is off. John believes it's the door ajar switch. We have to take it in on Monday. I believe this is the 15th time we've had issues with this car. It was three years old in November, bought brand new, and has just shy of 75000 miles on it. It is about 1500 miles to the good side of the extended warranty for all the good that did us. After that it is all up to us. Unfortunately, because of the miles I put on it, before we began settling the first issue it was out of lemon law warranty and by the time we convinced them that there were enough problems connected to each other it was out of regular warranty so they never stood behind any of it. The last four problems have occurred while under the extended warranty which costs us $40 a pop and we found out it doesn't cover computer issues which is what most of our issues with this car has been. I am very tempted to pain a big yellow lemon on the side of the car and list all the problems it's had in the short time we've owned it. Maybe it will make others think twice before buying a Saturn. It's sad too because our first Saturn was a gem. :(
Well, that's all for this week. I will touch base next week with John's Christmas Party (it's Saturday), John's Snip (Thursday), my MRI (Tuesday), whether or not I finish getting ready for Christmas, the lemon, and my son's Christmas concert. It should be a good and busy week with lots to talk about. *Huggles*
Thursday, December 13, 2007
I'm not really in the writing mood today so instead of rambling on about what is going on in my life or the world of brain tumors, I'm going to share with you a poem I wrote in the 8th grade. The story behind this poem is a bit funny but I'll let you read it before I share it. I'd like to hear your opinion of it, then you can read the bottom where I explain why I wrote it.
I can hear him in the background,
But he is so far away.
He may never be found,
But I shall look day after day.
I can feel his presence near,
Though I may never receive his love,
For I live in fear,
Like an innocent white dove.
I can see what he meant
And pray to hear more,
But I know he will not be sent
To show me the way to soar.
If we weren’t afraid to tell secrets
He’d be by my side.
My heart longs for him, yet it frets,
At the way he will forever hide.
He runs in fear of me,
An innocent white dove.
Someday I will see
Him return my love.
So what do you think? Tell me honestly. Now that you have formulated your thoughts on it and written a comment, you can now read on and get the "rest of the story".
From 6th grade until my Junior year of high school, I had a diehard crush for one of our teachers. He was extremely handsome and I just adored him, even in his faults. Well, one day I was in math class and I was extremely bored as the teacher explained something that I had already picked up on. In the class next to us, my crush was teaching and I could hear his voice through the walls. Thus "Angel's Cry" was born.
I look back and realize how crazy I was to have such a crush, but back then I truly adored him and would have given anything to be at his side. My friends from high school can tell you, I was nuts over him. My Junior year, after meeting and falling in love with John, my crush on him turned into respect and the remainder of the year was spent with this mutual respect and trust. I'll never forget one particular incident in shop class... wait, that's a story for another time. Another time when I just don't have an inspirational muse. :)
Anyway, He is obviously my teacher in the next room and he did show me the way to soar although I don't think he will ever know it. Although he may never return my love the way I loved him then, we did come to respect each other, and for me that is all the love from him I need.
I hope you enjoyed it.
Wednesday, December 12, 2007
Ok, just a quick summary of my last few days to try to talk down the spinning of my head. :)
Monday we were iced in and I worked from home for the day. I was so glad to have a nice quiet day working from home.
Tuesday school was called for my son and when my husband went to work we found out why. The entire town was out of power. Needless to say, he was sent home shortly and the boys spent the day at home. On my way home, I noticed that my car was doing strange things such as locking itself repeatedly. John thought maybe something was loose or wet and we didn't think anything of it. Then for a few hours that night, we had to deal with the car alarm going off multiple times for no reason. Well, it appears its problems include: locking itself repeatedly, alarm going off, and dome light not going off. We are to take it in Monday to be looked at.
Also Tuesday, I figured I better call and check the status on my MRI since I had not yet received a time for it. I found out they had not yet scheduled it. ARGH. Anyway, they have it scheduled for next Tuesday so it's not delayed too much. Well, today I was out in that area of town so I figured I'd go ahead and stop and get my bloodwork done. (You have to have bloodwork checked prior to having an MRI. I think I explained that in a previous post.) Apparently the doctor hadn't called in for my bloodwork so I had to wait almost an hour for it to all be sent through. To top it off, the managed to attempt to amputate my arm with this particular one because for two hours afterwards I had no strength in it!!! It's doing better now though and has FINALLY quit bleeding. We shouldn't have to be the ones to tell doctors what we need!!!
Best of all, after about 2 months of relative quiet at work, everyone is having problems this week. We have a new employee that I'm trying to get his laptop set up, we have a printer that has gone out, and I have received somewhere in the vicinity of 40 calls to handle "brushfires" in the past three days. When it rains, it pours, and I guess it this case we get ice as well. :)
Tuesday, December 11, 2007
This is going to be down a slightly different path then my entries normally take. This is about a little boy whom I have been following for several weeks now on his webpage. His name is Julian and he was diagnosed at four with a fast growing childhood brain tumor. I have read several months of the posts that his mom has made on the site about his journey, progress, and battles. I am sad to think about the fact that JuJu's battle is nearing it's end because his cancer has spread. I know I will miss the strength I get from a little boy I've never met and I can not imagine the pain that his parents must be feeling as they watch these days go by.
However, everyone is put on this earth to accomplish and touch someone. I know that Julian has probably touched countless lives with his journey and I am but one. It has given me a renewed strength to face this thing in my head... head-on. Where I once had doubts and fears about the meaningless areas of this journey, I now have the strength to push those fears aside and face this when it is my time. I still do not feel it is my time to face this, but when it is, I'm ready.
So I guess I will just end this entry with: Thank you Julian for sharing your strength with the world and thank you Mimi for letting us into your little angel's world. My prayers are with you.
This is on a similar path so I figure this is the place to include it. I wish to send my sympathies and prayers to the parents of young Evie. Evie was born with a heart defect and passed away quietly yesterday.
I've been joking for some time that the MRIs have proven I do indeed have a brain up there. Well, last Thursday we tested to see if I know how to use it. (The jury is still out.) Here is the detailed explanation that I promised you about what happens during an EEG.
First off, I was told to have no more than three hours of sleep the night before and given instructions about not going to bed before midnight and not sleeping past 5 AM, yadda yadda yadda. I thought this was going to be the worst part and the biggest challenge of this whole thing. Boy did I have a lot to learn!!!
So Wednesday night a friend from the West Coast stayed up with me online until 2 AM my time. (Thank you Jennifer!!!) I made it and amazingly enough, after I made it over the 11PM hurdle, I was doing pretty good. However, I was sure ready for that bed. I slept like a rock until the alarm went off. Sure enough it woke me out of a deep sleep which made me really tired. I dozed off while sitting on the couch that morning and woke up out of a cat nap at full hot wire. We took our son to the babysitter for school and went to the doctors.
This is where the fun begins. They have you sit in a recliner and recline it all the way back. I will admit that it was not one of the really comfortable recliners and I was pretty uncomfortable in it. (However I am usually more picky than others because of my height) Regardless, after getting me more hyper by talking, she began the process of measuring my head to determine where to put the electrodes. This took about ten minutes and she marked my head with something. (I meant to take my camera and have John take pics but I realized I didn't have it much to late to turn around and go back for it. If I ever have the misfortune of doing this again, I will take pics.)
Then she went to all the places she marked and used a gritty mixture to rough up the area so the electrodes would stick. It honestly felt A LOT like sandpaper and it hurt in some areas especially on the forehead and very back of the head. Then she attached the electrodes with some sticky stuff. I'm sure I looked quite a sight and I'm sorry I don't have pics. (I was interested to see what I looked like with them.) Then they attach two electrodes to your chest to monitor your heart rate (using the same method... OUCH).
Now that I was all hooked up, she went to her laptop and the lines began to go across. I don't pretend to know what they all mean but if I ever get the actual scans I will do what I can to explain some of them.
She had me open and close my eyes a few times to get me to relax and get a "normal" reading. Then a device about like a virtual reality simulator was put near your eyes and you were told to shut them. The device would shine lights similar to a strobe light for 10 seconds on with a 4 second break. I think this went on for about three minutes or so. Strobe lights cause some people to have seizures, thus the reason for this particular test.
The next phase of the test required you to hyperventilate yourself for three minutes. This part of the test truly sucked. I was breathing just as she showed me and my chest was starting to hurt. I thought I had to be almost done but alas I was only half way there. I really had to push myself to get through it and I did cough a few times during it. This could not have been good on my sinus and bronchitis.
Immediately after finishing the hyperventilation routine she told me to try to sleep. Yes, you read that right, try to sleep. You are kidding me right? After raising my heart rate to easily four times normal, you expect me to sleep? Needless to say, I was able to cat nap a bit but I never did sleep. I should have known I wouldn't. There's two things working against me, I am a belly sleeper (I hope my chiropractor doesn't read this) and the more tired I am, the longer it takes me to sleep. I NEVER fall asleep in less than 20 minutes. (This includes that Wednesday night.) So to give me 15 minutes with light coming in the window, on my back... it just wasn't going to happen.
She had me finish the test off by simply relaxing then it was finished.
She took the electrodes off and cleaned up the spots on my head, then we were dismissed. When we got into the car, I still had three vivid red spots on my head and one on the side of my head that was very vivid in color. These would last all day and part of the next. My head was extremely tender all day and it kept me from sleeping real well that day. The sandpaper stuff did what little else has luck with and that is hurt my scalp. I have long hair so I value the fact I have a tough scalp. LOL
It's now several days later and I have finally caught up on my sleep and my head doesn't hurt any longer. My neck on the other hand is bothering me yet again. I went to the chiropractor on Friday and it did well but yesterday late it started bothering me again. I have an appointment on Thursday so I will try to stick it out.
So there you go, the inside scoop on an EEG. Not fun but beats a brain biopsy!!!
Monday, December 10, 2007
Well, it looks like we got about a quarter of an inch of ice over the weekend and our road has yet to have the trucks go over it. (I hate when salt trucks miss a major road.) Anyway, John and I both decided to stay home today because of it. We're supposed to get more later today so this way it keeps me from getting stranded 30 miles from home. Luckily I can work from home and get things done. He can't but we'll manage.
Other than that we are just fooling around at home. I may try to take a break from work in a little while and do some more around the house. The house is almost ready for the Christmas holiday. I'll probably post about the EEG tomorrow and we'll see what the rest of the week brings.
Friday, December 7, 2007
Well, this has been a relatively eventful week so I'll try to see if I can put it all into logical order. :)
Medically - Thursday was my EEG as planned. I will say that I am glad it is over and I hope I don't have to do it again any time soon. Although not invasive or horrid by any means, it was far from a pleasant test!!! Anyway, we should have the results from it in a week or so and with any luck I'll catch up on my sleep sometime in the next month!!! LOL I will write an entry later on what the EEG was about and my typical detailed info on it.
I saw the chiropractor today to have my neck adjusted and I feel so much better since it was done. Also, my trigeminal seems to be doing some things this week, perhaps set off by the lack of sleep, so it will be interesting to see where that brings me. Maybe when my neurologist calls me with the results of my EEG, I will discuss my trigeminal with him some more.
Emotionally - Again, my emotions have been in check this week. I had a bit of crankiness the later part of the week but it's no wonder since I haven't gotten a three day sleep quota let alone a week. I did have some "thinking" Tuesday and Wednesday night but it's just those types of things that I will have now and then for the rest of my life. I don't think it's possible to be living with a "terminal" illness and not have those thoughts run through your mind now and again, especially on three hours sleep.
Mentally - I'm tempted to take this section out because honestly, I'm not a very good judge of my mental status. I mean, I think I am normal and I'm sure many would disagree with me there! However, I guess this can also include the things I'm doing to prepare myself mentally for what I am dealing with. I still need to write you guys an entry on Living Wills and I need to do research on wills/trusts. I keep trying to look into this one and do all the legwork I can because, let's face it, lawyers are expensive and if I can do everything but the legal jargon I will. Anything to save a few dimes. I also need to finish gathering together paperwork but I honestly plan on doing that over Christmas break when I can be in front of it and get it all together as I think about it.
Physically - Other than being extremely tired, I have been having a lot of problems with my neck again this week and I went into my chiropractor after my head felt like it could fall off today. Sure enough, it was pretty out. I had been having some eye twitches and intense "head aches" that was from it and since he adjusted it, I feel much better. Don't worry about the "head aches" because they are exactly as I get when I have a pinched nerve. If they didn't go away after the adjustment, I'd do something about it but that wasn't needed. :)
I have also been fighting the sinus pressure again. You have to love it when your body seems to come apart at the seams. Honestly, though, I think I am just still too tired to fight it all off and I need to go home and curl up in bed and sleep the rest of the week away.
Family - We have been having some problems with my son and school. It appears over the weekend he didn't do homework that he had so he didn't turn in the work on Monday. Then he got caught cheating on a paper. He did pretty good after that until today when I find out he didn't finish two homework assignments last night. I am in the process of trying to get him in to see what to do about his ADD since it is now worse than it's ever been. I just hope we haven't waited too long and it ends up causing him problems he can't get above.
John is unhappily counting down the days to his "snip" at the end of the month. (Vasectomy) He goes in on the 20th to have it done. We will officially be putting our conception journey to rest at that time. (Not that we have been trying since I was diagnosed but the chance was always there and honestly I think we both have been secretly hoping for a miracle.) Don't worry, I'll post all about it after it is over. :)
Play - We have gotten back into Puzzle Pirates a lot over the past few months and it feels good to be back with our friends. We also have talked a lot about our crew that we have been starting up and I hope to get that back into play over Christmas break. We have several documents to write and some skill levels of our own to increase and then we'll actually get to start recruiting. Honestly, I can't wait.
We also discovered a new game that is just one of those quiet, play on the side while you do other things, type of games. It's called Tribal Wars and it's at www.tribalwars.net We are enjoying it so far. I'll give a better update some day.
Lastly, I am in the process of handling my tasks for the Yule ball on Plano Hogwarts. I will actually have things quiet enough this year to enjoy it. YAY!!!
Ok, I think that's it. This week sometime I owe you guys a detailed review of my EEG, information on Living Wills, and maybe I'll finally finish up an entry I've been working on and never gotten to my liking about "my deep, dark secret". (Ok, now that I've peaked your curiosity, it's simply about some of the reasons I've chosen to wait on the open biopsy.) Have a great weekend!!!
Wednesday, December 5, 2007
Well, we have put up our Christmas tree and decorated it, I've spent some time on Puzzle Pirates, I'm desperate for some caffeine and sleep, but I've got just over five hours left now. (ok so it's about five and a half but still.) It's just now at my regular bedtime so I'm really starting to feel it if you know what I mean. I am missing my Pepsi One as well.
I may check in later. I've got a "slumber party" later with some friends of mine and I'm trying to get a poker game started in puzzle pirates so we'll see how it goes. :)
Tuesday, December 4, 2007
On Thursday, I will be having a Sleep Deprived EEG. What does this mean? It means that I am only allowed three hours of sleep on Wednesday night. YIKES!!! Do you know how hard it will be for someone used to going to bed at 8 PM (10 on a late night) to stay up all night? To top if off, I'm not allowed any caffeine and my boys will be in bed so I'll have to do it without distractions. Now there are plenty of activities I can do to keep me awake if the correct stars align but I'm not going to count on that. Here's my current game plan but if anyone is going to be around exceptionally late on Wednesday night, send me a message cause I'll need all the help I can get.
Puzzle pirates - Hopefully there's a trip to Atlantis going out that night. Depending on how well they are doing, I know John has been at least 10:30 coming to bed on those nights. This would keep me both preoccupied and awake.
Big Brain Academy on the WII - I will play this as long as I am still able to function mentally. Again, it's something I can lose a lot of time in.
Plano Hogwarts - If there is anyone on, maybe I can get occupied in that. Unfortunately, if it is quiet, I'll get bored typing to myself too quickly.
Blog - I can update my blog and write ahead some entries for those days I have no creative muse. Only problem is that I am unsure if mentally I'll be in check enough to do this.
Clean - I can work on the "dungeon" of my house for a while and see if I can make some more progress in there. The only problem here is that I have to be very quiet so not sure how long I'll be able to work in here.
Preparation Paperwork - Again depends on my mental stability at that hour of the night.
Surfing the web like a zombie - This will be my most likely 1:30 AM activity.
How's that look? Basically the guidelines are that I'm not allowed to bed before midnight, have to be up by 5 AM, and no more than three hours of sleep. I figure I will go to bed at 2 and then I don't have as much time to kill that morning. My appointment is at 8:15 so I'll still have three hours of walking around like a zombie that morning. However, I figure I can make breakfast for all of us, take my time getting dressed, piddle around the house, that morning because everyone will be up/gone so I don't have to worry about waking anyone. Oh, John is taking me to the appointment so I don't have to drive. It's a darn good thing.
I may update sometime Thursday on the appointment but I honestly won't make any promises. I'll probably be sleeping most of the day although I've told John to wake me no later than 5 so that I can sleep that night. With an 8:15 appointment I am guessing I won't get home until noonish (the appointment, lunch, and the 30 minute drive home) so that will be about five hours of sleep and then I can go to bed whenever I'm tired.
Ok, if I keep rambling you guys are going to think I'm sleep deprived now. :)
Monday, December 3, 2007
I'm sorry I didn't make an entry yesterday but a friend was sorting out the colors on my blog for me. Until about... what time was it Kat about 4... it did not look as awesome as it does now. Kat is fantastic at this type of thing and spent most of her afternoon trying to rescue it for me. :)
Speaking of Kat, this may be a good time to introduce her. Kat is working on a custom design for my blog for some time in the future and from now on, I won't make color changes without her help first!!! LOL She is a good friend whom I've never met in person but we have A LOT in common. She is also color and technically savvy enough that she has agreed to update my blog if I am ever in a position where I can't. So if something goes on, you guys will be updated thanks to her. (I'm hoping that it's many years before we have to worry about her making an entry though unless she just feels like it.)
There was something else I wanted to say but I've completely lost my train of thought. Well, I'm sure I'll think of it later. Until then, I'll see you all later. *Huggles*
Saturday, December 1, 2007
Ok, I have changed my layout colors a bit to be more festive. I apologize if it is a change for the worse. I have always been "design" challenged and I'm severely color impaired so it's scary for me to even consider making a change but I wanted something a little more Christmas. If I get really creative, I may even add some other elements but don't count on it. I was skipped when God was handing out the visual creativeness and he gave me an extra dose in the written word creativity. LOL
Yes, I am one of those that wears a lot of black and white because they go with almost everything and therefore I don't have to try to color coordinate it!!!
Happy December 1 everyone!!!
Friday, November 30, 2007
This will actually be a two week review since Thanksgiving messed up my schedule last week.
Medically - We have finally gotten my EEG scheduled for December 6th. It will be a sleep deprived EEG (I'm not allowed to go to bed until after midnight, they want me up no later than five, they prefer only three hours of sleep, and no caffeine.) They have sent the precert through for my MRI, if all goes well, I'll have that Friday the 14th. Beyond that I am still taking the Gabapentin for the trigeminal.
I think I will add it here that I finally signed up for Medic Alert again. It's been at least 20 years since I have had a bracelet. I should be getting my new bracelet soon.
Emotionally - This has been a good two weeks emotionally. I've been told by a few people that I seem to be back to myself now so that makes me feel good. I've been focusing hard on doing my meditation every night and I think that has allowed me to sleep better. Overall, other than a bit of crankiness the past few days for unrelated reasons, my emotions have been steadily normal. :)
Mentally - I have had a good two weeks productively. I've been working on preparations, actual work, getting things done at home, etc which is something I haven't been able to grasp real well since the diagnosis. I am thinking much clearer and I don't feel so bulldozed anymore which is a good sign.
Physically - There has been no real change physically other than the sinus pressure still hanging around. Tomorrow is the first day of December so I think I've already gone longer than I ever have without a full blown infection. YIPPEE!!!
Preparations - Last week I successfully finished my living will, had it witnessed, and discussed it with my Agents. It is official. I will probably put out an entry on it some time next week. I have also began gathering information such as people to call, account numbers, financial information, etc. This will be a long process but it is something I need to do since I am the primary record keeper in the house and John has no clue what is going on. Finally, I have been working hard on decluttering the house and it is looking fabulous!!!
Family - Last week was Thanksgiving and we spent it with my Mom, Dad, Brother, Grandma, Uncle and his three kids and grandchild, and of course the three of us. We had a good time eating and playing games. Then on Saturday was my Dad's 50th birthday where we had a surprise party for him. We had a great time!!!
Play - It was really a quiet two weeks. We had the party on Saturday where we saw a comedian, danced, some drank, etc but other than that it was really quiet. We have dance tomorrow night.
Ok, I think that wraps up the two weeks. This wasn't very long for two weeks... it may be that if I don't have much we do every other week more often. We'll see. *Huggles*
Wednesday, November 28, 2007
On Saturday, when we had my Dad's birthday party, we had the privilege of watching the comedian Tom Morgan aka the Rajun Cajun. He was absolutely fantastic and had us all laughing hard. If you ever get a chance to see him, jump on it.
Anyway, he touched on many topics including a rant about Popeyes, women putting on makeup, and child raising. Some of the things he joked about made perfect sense in so many ways but when you think about it, it is funny. For instance, have you ever wondered about some of the quirks with putting on makeup? Why do some women put on so much blush they look like "they had a fight with bozo the clown?" Why do we blow on the end of a blush brush when we are putting it on? Have you ever looked at the faces we use when putting on mascara? Just funny little quirks like that you never think about.
I will say he is absolutely crazy when he is up there. He is all over the stage, removed his shoe AT LEAST three times, and was very animated.
I talked with some friends afterwards and they had talked about how they had gone to see him once with some "very religious" friends/family. If you fall in this category, Tom is NOT the person for you to go see. He is NOT the PG13 that the place had rated him as. Definitely R rated so if you have problems with minor curse words or hearing the f-bomb now and then, do NOT go see him. However, if you are a good-ole folk that believes in some of the old ways and can laugh at yourself, go see him as quickly as you can. :-)
Tuesday, November 27, 2007
I wrote this over a week ago and never found the opening for it. So here it is now.
It was buried among other lines meant to bring a laugh... and so it did. It's the truth and you'll see what I mean when you read it. However, it also spoke the truth in a very different way.
I've learned that the people you care most about in life are taken from you too soon and all the less important ones just never go away.
Can you see how this can be taken both ways? It sent a chill to my bones. So innocently placed yet so much meaning. Alas, I don't know which category I fall in with most of my friends, but I fear I'll be in that first one.
I'm sorry, I'm just a bit somber today for some reason. Sometimes, the smallest words can bring you to a new perspective. Therefore, I leave you with the words: don't sweat the small stuff, stop and smell the roses, and tell those people you care for how much you love them. I love you.
P.S. I don't know if the person that sent this to me reads this frequently but I just want to make sure you know, Thank you. It may bring me down sometimes but it is a reminder that life goes on. *Huggles*
Monday, November 26, 2007
I hope everyone had a wonderful Thanksgiving. We had a great weekend and we enjoyed some nice "play" time but we also got a TON done. I'm so sorry I didn't post at all over the holiday but I'll try to fill it all in now.
Let's see. Starting with Wednesday I guess. Wednesday night I was in a bit of a "down" mood and after we finished supper and the like I decided to have a few drinks. I won't get into details but let's just say that I can now honestly say that at 28 years of age I became drunk for the first and LAST time. :) I found out that Gabapentin (Neurontin) and Cherry Vodka don't mix very well. Surprisingly after getting sick a few times before bed, I felt pretty good for Thanksgiving. (Well, I didn't feel well either Thursday or Friday but I now believe that John gave me his ickiness and it was not related to the alcohol.)
On Thursday we went to my Mom and Dad's for Thanksgiving dinner. We had a nice quiet Thanksgiving and we sat around eating and playing games most of the afternoon.
Then on Saturday we had a surprise birthday party for my Dad's 50th birthday. It was really great and he was totally surprised. We had it at a local bar/comedy club and we got to see Tom Morgan the Rajun Cajun at it. He is absolutely fabulous. I might post an entry about him later in the week. We had a blast dancing with family and some of them worked hard on getting a little to polluted but that's ok... I think they all ended up finding sober rides.
Other than those things, we spent a good majority of the weekend with just us as family... oh and cleaning. We were able to finish the outside shed and put everything but the aluminum cans up. We'll have to load those in John's truck for him to take in next week for recycling. Then we worked on the "former baby, current garage sale, later game" room. This room was a total disaster with lots of baby stuff everywhere and it's getting piled in now with stuff for a garage sale next spring. However, we can now walk through it and I will be able to sit back there and sort through things all winter. After we finished getting this room done, we were able to go through the back area of our Great Room and move all the garage sale stuff that was there into that room. So now my Great Room looks like a family room instead of a garbage dump. YAY. It was a lot of work but it is so nice to have it done. We took out about 9 garbage sacks of crap from those two areas.
On Wednesday night we watched "Teenage Mutant Ninja Turtles" the movie but we weren't too thrilled with it. We intended on watching another but we never got around to it. OOPS. Then last night we played a game of risk after we were all done with supper. I won. We played mission and I was able to get all of Africa and N. America before the others could get theirs.
So overall, I'd say we had a wonderful weekend and it makes me look forward to the long Christmas holiday. I have a ton to do between now and then but we'll be able to just chill after Christmas is all over. I am having Christmas at my house this year for the first time since we moved out here. And I haven't started my Christmas shopping yet which means I'm about a month behind. YIKES!!! I'll probably do what I can online but I have to figure out what I'm going to get people first. Maybe I'll just hand out coal this year.
Well, that's enough rambling for now. I may go into more details on Dad's birthday and maybe a few other things later in the week. I don't want to overdue things and not have anything to write about. *Huggles*
Thursday, November 22, 2007
Wednesday, November 21, 2007
Tomorrow in the USA is Thanksgiving day. It is a day set aside for us to give thanks for the many things in our life and most of us enjoy a large feast with our families. Too much food aside, this is my list of what I am thankful for.
I am thankful for my family who is with me each day, shares in so many areas of my life, and whom I can enjoy the good times with.
I am thankful for my friends both online and in real life that have given me so many wonderful memories.
I am thankful for God who has given me 28 beautiful years of life and hopefully many more to come.
I am thankful for my health, both good and bad, that has reminded me that not every day is lined in gold and rather you should live each day like tomorrow will never come. Yes it seems odd but I am thankful for the tumor in which I share my head with because it reminded me that life can be taken away at the drop of a coin. :)
I am thankful for my Son who reminds me each day that youth is beautiful and some of the best gifts we receive start out in small packages.
I am thankful for the blessing I've received in living my life each day with my true love at my side. I know that not everyone is blessed enough to ever find their true love and John is that and so much more to me.
I am thankful for my life, my health, my family, my friends, and each breath I take. What are you thankful for?
Tuesday, November 20, 2007
I believe there really are people that read my blog that know me in real life. Some of you I have probably seen. Others haven't seen me for a while. However, I have had more questions of late about the newest additions to my wardrobe so I figure now is a good time to explain them so that I can satisfy your curiosity and perhaps give you an insight on what keeps me sane some days. (Ok, so I'm never sane so just my normal level of sanity however low that may be.)
First off, what I am referring to is a purple stretch bracelet that I wear on my right arm and a grey stretch bracelet I wear on my left arm. The purple one says "I'm Flying" and the grey one "Sharing Hope" and has the American Brain Tumor Association's website on it.
I can hear the question already... what do they mean and isn't having a brain tumor bracelet a constant reminder of what is in your head? I'll answer these both... one bracelet at a time.
You see, early on I did not hold up very well and even though I hide it well, I was very emotionally vulnerable all the time. One day I was cleaning my Master Bedroom and I found my purple "Flylady" bracelet that I had bought many years ago. I had looked for it before and had a hard time finding it, so this was almost like a sign. I immediately put it on and felt warm. I felt warm because it reminded me of all my friends that were out there praying and thinking about me. So what is Flylady? Well, you can check out Flylady to see for yourself. It is a group that was developed to help SHEs (Sidetracked Home Executives) keep their spirits up and dig out of the clutter we have all found. (Basically it's for those that can never seem to get ahead and it is very sensible in the approach. However, this is more than I wanted to get into about Flylady in this entry.) Check it out if you are interested. Anyway, I've been a member of the group for about 6 years now and we have group boards all across the country. One of the boards is for Illinois and I have met many wonderful ladies there. We help each other through many obstacles in life. So this is the connection between my friends and the purple Flylady bracelet. It reminds me not only of my Flylady friends but of all my friends that are rooting for me.
The grey bracelet came later. I learned that grey is the universal symbol for brain tumors. Yes, I know, it's that reminder thing. I bought my bracelet at the American Brain Tumor Association Website. However, to me it isn't a reminder that I have a brain tumor. Instead, it has become a reminder that life is short and you need to enjoy every minute of every day. We never know when our lives or our loved ones will be taken from us. So we must cherish each day, say what needs said, leave no rock left unturned as we make our journeys each day. It's my reminder to grab the moment and never have any regrets. It's the reminder, when the day is hectic, to stop and smell the roses or watch the falling leaves. It's the reminder to live.
With the assistance of these two bracelets, I have not let anything block my path in life and I am never alone. Even when I feel that my heart is ready to break, I have this little reminder that I'm not done living.
Do you have a reminder to live? :)
Monday, November 19, 2007
When telling my story and talking about my three opinions, one of the first questions I typically get is: "How can they not know how big it is?" Well, here's the answer illustrated to the best of my abilities.
The picture on the left is of the lower portion of my brain. It is mostly normal. As you can see, other than some minor areas where there are creases in the brain (this is normal), it is consistent. This is what a brain should look like throughout an MRI scan.
The picture on the right is my brain where the tumor is located. (The right side is on the left) You can clearly see an area pointed out by the black arrow that is more than likely tumor. It is almost perfectly round, has well-defined edges, and is about 3 cm by 2 cm in size. Easy enough, eh?
The question comes in when you look at the area pointed out by the green arrow. This large area around it is also discolored but what is it? Is this tumor? Is it edema (swelling)? Just what is this area? That's exactly what we are hoping to find out at some point. In looking at the scan and looking at the fact I am having no symptoms from this, you want to believe that only the small area is tumor.
However, when you look closer, you see that the brain has been pushed from it's center point and there is pressure occurring on the other side because of it. The brain should have a straight line going up through the center of it dividing the two lobes. My brain does not. This is squishing occurring because of the tumor. Looking at it that way, it doesn't seem possible that the smaller tumor could do that much pushing and you notice that the pushing starts down where the larger area is.
Ah to ponder the human brain and it's amazing abilities. If indeed it is as large as the second mass, I have to ask myself how I am still functioning day to day. It's hard to imagine that something the size of an orange cut in half, can be placed in something the size of a cantaloupe and not cause enough damage to have some signs. I guess my brain is just doing it's job and rerouting as it sees fit. :)
Maybe this was a bit TMI for some but I do hope this helps clear that question mark in your mind about why there can be a question as to the size of my tumor.
Sunday, November 18, 2007
AKA, Game plan
If you haven't yet read the post "A Weight off of my Shoulders," you should do so before reading this one. Otherwise, this post may not make a great deal of sense to you.
Now I'm not totally unreasonable. I do realize that there is a point in time where my quality of life will lower below that 100% and there is a good chance that lowering will be caused directly by the tumor. I'm sure when that happens, I'll get a lot of "I told you so" from some people but that is a chance I'm willing to take. I have told John that I have drawn a line in the sand of what it means to me to be below 100% when it comes to the tumor affecting me. Here's what the line is:
1. Grand Mal Seizures
2. SPS (Simple Partial Seizures or Petit Seizures) that develop to the point that I can no longer live my life in a meaningful way.
3. A headache that develops and floors me for more than 48 hours or recurs for more than two weeks. (two weeks because sinus and neck problems have been known to do this to me but not usually longer than that time frame.)
4. Paralysis on my left side.
The only thing that would convince me to do it without my quality of life being affected below that barrier is a change of more than a cm in a one year period. I know that this would mean it is growing faster and it's a now or never slot.
Now, by waiting for these things to happen, I have a little more leverage when going into a surgery. One it is no longer elective. Two we have proof that there is probably more than a Grade One tumor up there and thus I can more easily convince a doctor to do a full resection instead of just the biopsy. I don't see the point in going in there once, taking a sample, finding out it's a tumor of a higher grade, and then turn around and do it all again. They have to realize that this will be a one time opportunity and if they don't take what they want the first time, they won't do it again.
So by waiting, not only will I be able to feel that it is time to do this, but I will also have a little leverage in doing this thing the first time.
I have promised John and I am telling you all now, that if any of the above occurs, I will be in surgery as soon as the hospital can squeeze me in. In my heart I know that there comes a time when you have to sacrifice a bit of your quality of life for the greater good. When that time comes, I will recognize it and I will tighten my grip on the bull's horns and stare him directly in the eyes. Until then, I will continue to take this battle one step at a time and I won't be running to fast.
Saturday, November 17, 2007
Many of you saw that I have made a final decision on whether I will be doing the open biopsy or not. (For those that haven't seen this I have decided not to do the open biopsy.)
For my entire life, I have been against many different things when it comes to the practice of medicine. I don't agree with tests that are just done as routine and I am not afraid to go against what a doctor says and carve my own path into the practice. I am against some forms of treatment that are considered "routine" and there is no such thing as a minor surgery in my eyes. I believe those that undergo elective surgery are taking a risk not worth taking (nothing against those that do choose this path) and that type of thing is not for me no matter how much it will benefit me or make me feel better. Most importantly, unlike many people, I do not fear death. It is a natural part of the cycle of life and there is nothing to fear about it. I don't want to leave those I love behind, but at the same time this lack of fear allows me to face situations head on and with a clear head I wouldn't normally have.
Some of those that are closest to me, know all these things about me. They know how I feel about certain procedures and they know that quality of life is 1000 times more important to me than quantity. This is why they were so bamboozled that I could possibly like my third opinion doctor so much that I'd be considering this open biopsy. I'll admit, looking back, I have a pretty good understanding of why and it's all the wrong reasons but I'll get to that later. So it was no wonder that this completely uncharacteristic feeling would eventually push me to the brink and corner me into making a decision. I'll admit that it took the doctor answering a lot of my questions. Although exactly as I knew he would, it was the confirmation I needed to know that I was not ready for this and since there is no reason for this right now, I would not be doing it.
You see, the reason for the open biopsy is so that the DOCTORS know what is really going on in there. They can determine what the actual size and grade of my tumor is and therefore come up with the best plan to treat it. Notice I said that it is so the DOCTORS know. Here's the key point. I don't care what is up there. Whether it is a Grade One Glioma as we suspect or a Grade Two Glioma that needs to be radiated, I'm not going to do anything right now. If I am not having symptoms from this tumor, there will be no further action. Therefore, what is the point in knowing right this second what I am dealing with. I'm not going to do radiation or chemo or even have resection until I am having problems. So why go through this "biopsy" now? It's so the doctors know what is going on and so that those around me know just how bad it is. Not because I care what it is or care how bad it is but because others do. Do you see where the problem is now? Many people immediately pick up on how compassionate I am. Guess what, my compassion nearly led me to have a major surgery just to find out how serious the thing in my head is. Definitely time to back away.
My mind pushed itself into a corner and told me, "if you don't make a decision right now, then I'm going to cower into a little ball and I'm going to stay there until you take this into your hands." That's why I began looking at the whole picture instead of this tiny piece of hell I've lived in for 13 weeks. When you look at it technically, I have not found this thing. It doesn't exist. When you look at it from a quality of life aspect, it is not affecting my quality of life in any way. It is doing no harm to me. My quality of life is 110%. Because of this very thing, doing the open biopsy would essentially be an "elective surgery". Well, you all now know my feelings on elective surgery. The decision became easy when I thought of the elective surgery, the fact my quality of life would be lowered to a minimum of 50% for up to six weeks and possibly longer following the surgery, the fact my life will probably never return to 110% even after I do heal, and the fact that I am not doing this for my benefit but for the benefit of others.
I talked with John and he agreed that I am doing the right thing. In all honesty, his opinion is the only other opinion that matters because it affects he and I's life the most. (Yes it affects my son's as well but he will one day move on and have a family of his own... John won't, at least not with me if something happens.)
I've decided this ended up being longer than I intended and I still have a lot to say, so I will be stopping this one and there will be future entries with my game plan and maybe even a few other things. Until then.
Friday, November 16, 2007
Ok, I've decided that on Fridays I will give a bit of a week in review thing for you guys. I will basically give the run-down of my emotional, mental, physical state, preparation and review what happened in family, play, and other areas throughout the week. So here is the first Week in Review.
Overall this week has been productive.
Medically - I received a reply from my NeuroSurgeon, whom answered approximately 30 of my questions about the open biopsy and some other tests that I have been researching. The answers have prepared me for what may occur one day. I may go into details on this some day but it isn't for the here and now.
Which leads me to the emotional part of the week.
Emotionally - I felt good throughout the early part of the week and felt that I was finally getting over the hump. However, after talking with my doctor on Thursday and getting some things confirmed, I had a rough spell. I knew that I needed to make a decision on what to do and I needed to do it soon. Therefore, I thought hard and made the decision to not have the open biopsy unless there are problems that arise. John is on board with it so we will step away and enjoy our lives until God gives us the sign that we need to do more. I will post an entry later on this whole process with more details.
Mentally - I have been much clearer since making my decision and I am hoping that my productivity can kick back into normal.
Physically - Things are about the same. I'm still asymptomatic and the numbness on the right side of my face is at about 85% healed. (That or I'm just that much more used to it.) I had some lack of energy early in the week but that has been recovered since making my decision. I have also had some sinus pressure this week but my hayfever med is doing its trick and it's holding things down. It would probably be a first if I make it all the way to December without a full blown sinus infection.
Preparation - I have made some progress on preparing for the future and other possibilities as well. I have worked on "seizure proofing" my office at work so that the sharp edges are no longer a threat (just in case) and I sent an email to HR and my boss with pertinent medical information they may need. Furthermore, I have been working on my living will and I believe that I am almost ready to have it witnessed and to go over the details with those who will be in charge. I will go into more details on that process after I finish it all. Also this week, I obtained a copy of a software program that will assist me in writing John and I's will. This is something that I've planned on doing for a really long time and now it is finally moving forward. Again I will talk more about this after I get things figured out.
Family - On the family front, my cousin (she's actually a cousin once removed or something like that but cousin is easier to type) got through a double mastectomy without any major complications. Jazer is doing pretty good this week to my knowledge and I think he is finally settling down for the school year. I got him some books that he's started looking at that I think is helping him understand more about his ADD. We'll see if it continues to make a difference. John has been fighting some sinus issues but for the most part he is just his normal self. He and I have had a few breakthroughs this week in the medical front, however, we still need to make some progress on the "preparation" front. He is very uneasy about moving forward with these things even though he knows that it is something that needs to be done anyway, not just because of my diagnosis.
Play - This week was a bit on the busy side but wasn't overwhelming. We had a Family Reading Night at the school on Tuesday and Jazer loved seeing one of the teachers that had retired at the end of last year. He apparently has missed her more than we realized. We had a good time. On Thursday we were supposed to have dance but we found out that our caller was down with the flu. I hope he is feeling better soon. *Hugs* Saturday we have plans to attend a dinner for one of John's co-workers who is retiring and then go dancing. I am excited to get back out on the dance floor.
I think that about wraps up the week. Maybe next week will have more interesting things to read.
Thursday, November 15, 2007
It didn't take me long after talking with my third opinion doctor to decide he was the one that was going to make a difference in my course of treatment. I realized after we had only spoken for a short time, that I adored him, trusted him, and was ready to put my future in his hands. As the weeks since speaking with him has gone by, the more certain I feel he is the right choice.
Last week I called his office to ask them for an order for my EEG and MRI for December. I left a message and also told them I had some questions and would like them to call me on them. The next day I received a call from the head clinician and he left me his direct number. I called him back and told him what I needed from his office and that I had some questions typed out for the doctor. He gave me his email address so I could send them to him directly. He told me that the doctor would be out of the country until Wednesday but that'd he'd get back to me.
Well, last night I had a message on my voice mail. It wasn't from a nurse. It wasn't from an intern. It was from my doctor himself. I was nearly floored because I have only talked to a doctor on the phone once in my 28 years of life. Usually you get the nurse!!! Anyway, he gave me his direct number and asked me to call him back to discuss my questions.
I called him back this afternoon and he had told the receptionist that if I called, have him paged. Again it floored me to have a doctor care this much. I wish I could say that the conversation continued on that note but he confirmed so many of my suspicions, I am still not sure what road to take. However, that's not for this entry. In what I was hoping was going to help clear things up, I am now more confused than ever. The fact I do trust this doctor makes it even harder.
Wednesday, November 14, 2007
Hear me out here. I have had countless people say to me, "Amy, you amaze me in how you are handling this whole thing," or something like it. Believe it or not, this very thing has weighed as heavily on my mind as the fact I have a brain tumor. Am I really that different in how I am handling this? Am I handling this is such a way that I am setting myself up for a huge fall? These are questions I ask myself. Well, the opportunity finally arose today for me to ask my therapist his honest opinion on this.
And the answer is: I am handling it exactly as he would expect someone of my personality type to handle it. He didn't hesitate on the answer. He didn't think about the answer. He immediately gave me his unbiased thought on it.
Basically, every personality type handles this type of situation in its own way. My personality type takes the bull by the horns and faces it head on and makes sure that there is no avenue left unexplored in the process. He assured me that he would be worried if I was handling it any other way. It makes me feel better now that I know that, although I may be handling this differently than most of the people around me would, I am handling it as would be expected of someone like me.
I guess, in reality, I am still unusual in that most of those around me do not have my personality type but for those like me, I am normal. (Yes, it's a scary thought to think of me as normal.)
Monday, November 12, 2007
There is a song called: "Letter to Me" by Brad Paisley that I have now heard on the radio a few times. The first couple of times, I didn't listen real closely to the song but today I had the chance to listen to it in its entirety and the lyrics struck a chord with me. The song starts something like this:
If I could write a letter to me
And send it back in time to myself at 17
First I'd prove it's me by saying look under your bed
There's a Skoal can and a Playboy no one else would know you hid
And then I'd say I know it's tough
When you break up after seven months
And yeah I know you really liked her and it just don't seem fair
All I can say is pain like that is fast and it's rare.
Anyway, after listening to it carefully, I asked myself... what would you say in a letter to your 17 year old self?
I'm not a song writer so instead of sounding good in song, I am writing a real letter. I think my letter would go something like this:
I know that you believe in mystery so this will be one of many for you to keep, this letter is coming from you, 11 years from now. But you say that this can not be true, well let me prove it to you. Right now you are trying to make a choice between the easy way out and following your heart. Let me tell you that your heart is right.
You are about to journey into a few scary yet highly rewarding years. He really is the one. He will love you until the end of time. Your love will pull the two of you through the hard times to come. You will be scared. You will question whether you did the right thing. Let me tell you now that it is all worth it in the end.
Let me tell you now, to live for today. Enjoy every step, every breath, every sunrise, every sunset. There will be a tomorrow but why throw away today? If you live for tomorrow, you will miss your son take his first steps and you will let his childhood pass by much to quickly. If you live for tomorrow, you will forget how lucky you are to have a loving husband. If you live for tomorrow, you will find it hard not to regret. However, remember that everything that happens makes you who you are. And looking in the mirror at this strong woman before me, I would not regret anything.
I will tell you, as you struggle through the next few years, that it is simply a training program for the struggles to come. It is a test of your strength. It is a test of your character. It is a test of your love. You will survive it to face the next challenge head on. Do not hesitate to take the bull by the horns at each pass and rely on your strengths to make the decisions you know are right.
Talk to those much older and wiser than you. Tuck away all of their wisdom so you can refer to it when you are my age. Ask the tough questions, you might just be rewarded before it's too late.
Oh, and would you start that journal back up and keep it going? I know it's hard sometimes to think of something to write each day, but it's something you will cherish. I will see you some day when you are my age, looking in the mirror at your ever graying hair, wondering what tomorrow will bring and thinking about all the paths before you. The paths may not always be laid out in stone but thus far there has been a beautiful waterfall at the end.
I shall see you in 11 years.
Ok, so maybe this entry was a little on the strange side but I had fun writing it nonetheless. What would you say to your 17 year old self?
Sunday, November 11, 2007
Ok, I posted about how I had found a friend on MySpace. Well, I had actually found two friends on MySpace that I wanted to find again. They have both replied to me. It's kinda exciting to find those that you have thought about but been away from for so long. I think the last time I saw them was 10-11 years ago but they would frequently come to my mind. I had found one of them previously on MySpace but hadn't worked up the courage to message her. I guess if there is anything good that has come out of my diagnosis, it's that I no longer put things off to tomorrow when I can do something today. I'm so glad I did!!! It's really exciting to find out what those that meant a lot to you as a child are doing.
Anyway, I did say that I'm three for three. The third person I didn't find on MySpace but rather on my former school's website. She was a teacher I had that made a huge difference in my life. I emailed her to let her know how much she meant to me and to thank her for everything. She replied and she was happy I had done so. She really was a teacher that carried me through so many years. They say that most times there is a single teacher that can make a difference in a child's life. Well, she was that teacher for me so it meant a lot that I was able to find her and thank her. As it turns out, it's a good thing I did so now because she is planning on retiring after next school year.
Now I have one more friend from my early years that I hope to locate but I don't believe she's on MySpace. I will hopefully run into her folks again. I see them every now and then at the store. If not, I can always give them a call and see if they have any info for me. That's for another day though.
God works in mysterious but wonderful ways.