I just wanted to send out a Halloween greeting to all of my online blog readers. I hope you have a fabulous night, enjoy watching the spooky ghosts and goblins that venture into the night, and have a great Halloween. Tis the night that anything can happen. Love ya all.
Wednesday, October 31, 2007
Tuesday, October 30, 2007
Well, I figure today I am not really into anything deep so instead I will blog about my favorite holiday... which just happens to be coming up tomorrow. :) I have loved Halloween for as long as I can remember. I love to look at all the original costumes that some come up with and I totally love to be scared by the "creepy crawlies of the night". John never quite understood this fascination by me since I totally detest so many of the movies that deal with being scared and gore. I just remind him that ghosts, the tingling sensation you get when you know you are being watched, and the gentle brush against your leg of an unknown entity is very different than someone going around with an ax murdering people. To illustrate my point a bit... I love the Sixth Sense but movies like Saw are just a bit too much for me.
Anyway, normally I totally decorate my house making the Great Room look about like an old abandoned house. I even have a custom made candelabra that I place on my kitchen table. I love the total ability to use your imagination. This year there was just too much going on and I chose not to decorate. It was probably for the better since things have been so hectic. But you can be assured that next year I will be back into the swing of things and I will post pictures.
Several years ago, I did a haunted house in my garage. It was just small and didn't really have anything special but it was fun. Some day I'll get a real haunted house set up again. We'll see. Speaking of haunted houses, some of my fondest memories as a teen was going with a good friend of mine to the haunted house in a nearby town. They were one of the best in the area (they still have it actually) and her dad worked there so we would go visit. It was always a blast. Especially when all the creatures of the night knew your name. *WHAAHAAAHAAA*
Well, I can't think of much else to talk about with Halloween right now without boring you all. I think this is why I sometimes don't blog about real life... I am boring. :)
Monday, October 29, 2007
Hi everyone. Sorry I didn't blog at all over the weekend. After ten weeks of living in the unknown, DH and I decided we needed to just go out and have some fun as a family. We took of on Saturday and used our Six Flags season passes for the final time of the season. We had a good time riding the roller coasters (shhh... don't tell my doctors because I'm sure I probably shouldn't be riding them) and enjoyed their Fright Fest. They had several really neat shows and creepy crawlies around every corner. They even had a nice haunted train ride that DH and I enjoyed. (DS hid his head in his coat during the whole thing.) I highly recommend it to everyone who enjoys the "things that creep in the night".
Other than that, we have determined that I will eventually do the open biopsy but that it will not be any time soon unless something prompts it to be done sooner. I will be having an EEG as soon as I work out how I'm going to organize my doctors. It may take a few weeks to sort things out. Basically, I will need someone here locally to help me schedule tests and report the results to my doctor who is 3 hours away. I'll have to decide who I want representing me down here.
Today is my Great Aunt's funeral so I won't be around work most of the day. I can't wait for life to get at least partially back to normal. I will be writing about my "preparations", detailed descriptions of tests, and some more on my medical planner. However, I might actually be able to make some posts related to my "life beyond the tumor", very soon. I know that at least for the start of this blog there's not been a lot of content beyond it. Unfortunately, that has been the biggest part of my mind lately and you write what you feel.
I look forward to writing more soon but for now, I've got to get some things sorted out to go to the funeral. *Huggles*
Friday, October 26, 2007
Some of you have already seen this but thought I'd post it in my blog so I forever have a record of it.
As for tumor size, he said there is no real way of telling without going in. I like his honesty on this. His recommendation is to take my time and watch it while I contemplate what I want to do. He assured me there is no definitive answer right now and that only I can make the decision on what to do and when. His recommendation is that, when I am ready, I have an open biopsy as opposed to the burr hole biopsy. He said the difference is that they would make about a four inch incision, remove part of the skull, and then remove a large portion of the tumor and/or frontal lobe that would then be sent to pathology. This would give us a firm idea of what we are dealing with. He assured me that the only complications beyond that of normal surgical risks are of seizure which is something I can have at any time regardless of whether I choose to do anything or not. He said that even though the open biopsy sounds aggressive, the chance of causing me any personality harm in the process is minimal compared to what might occur with a resection because it will be strictly on one side of the brain.
The other thing he recommended is an EEG and I will be seeing if one can be done locally or if we will have to return to Chicago for that. A minor test, no big deal.
At this time, I will continue to watch it for any signs of change. Now is not the time to attempt to undergo any type of surgery with my history of sinus/bronchitis issues so nothing will be done for a minimum of six months. In the meantime, I will continue to prepare and educate myself and we will take the next step when that time comes.
There's your latest update. Nothing like having a problem that no one can really agree on. I always knew I couldn't ever have an easy problem. :)
Ok, so my first opinion when this thing was originally diagnosed can now be called the "conservative" diagnosis. He believed that my tumor was relatively small, benign, and inoperable. His opinion was to have a needle biopsy done and then watch it for any change with frequent MRIs. This was obviously what I "wanted" to hear at the time but was it truly what s going on?
My second opinion can now be called the "aggressive" diagnosis. He believed that my tumor was very large, probably benign, and operable. His opinion was that we go in and remove this thing and he was pretty certain he could get it all. The total opposite of our first opinion and the wake up call that this thing may be more of a beast than we thought.
Now my third opinion is what I am considering the "honest truth." He believes that it is not possible to tell how large my tumor is or even if it is a tumor at this stage. He also believes that surgery at this stage is NOT my best option. His opinion is that we perform an open biopsy so that we know exactly what is going on in there and determine what, if anything, should be done from there. He believes that if it is indeed a Grade One Glioma, it should be left to its own devices because essentially it is "a birthmark of the brain". He also believes that under the circumstances, this is not necessarily something that has to be taken care of right at this moment. He acknowledged the risks either way and was the first to clearly state that there is no 100% correct choice because that can not be known until it is all said and done. Talk about being honest.
Wow, nothing like going full circle. I realize now, that regardless of what I choose in the end, there was a reason I put the stop to doing the biopsy early on. I had other opinions to see and digest before we took any action. Amazingly enough, I was very against considering the needle biopsy after I made up my mind about what was going on. Now, I am seriously considering a procedure much riskier as a very valid option probably in the next few years. The good news is that it is no riskier than any other surgery you might have and the only serious risk outside of that is the possibility of seizures. That's not a positive outcome but when you think that I could have seizures at any time anyway... maybe it's a worthwhile risk.
So, no decisions have been made in the official at this point but I do have a new doctor that I am very confident in. I frequently commented that my second opinion was with a doctor that I had a great deal of confidence in. I was quoted as saying "The third opinion doctor would have to sweep me off my feet to convince me otherwise". Well, this doctor has done just that. His "bedside" manner is wonderful, his way of explaining things is top notch, and I appreciated his upfront honesty. However, the most important thing he gave me is confirmation that I don't have to make any type of decision here and now. I have time to live, love, and contemplate all of my options.
I will possibly have some more entries about this later but for now, I'm going to do those first two things on my list. :-)
Thursday, October 25, 2007
Before I start this entry, I wish to say that at around the same time I sent out my previous entry, I received word that my Great Aunt had passed away peacefully. Things are not easy for many of my family and I ask you to keep them in your thoughts.
Ok, this is the entry I intended to write yesterday. Forgive me if it seems a bit... disheveled but the formulation of my feelings has come over several days and many, many discussions. Furthermore, this is the first time I've put them in writing when I wasn't being prompted after every sentence for specific details. :)
My decision is that I will not do anything until I receive the sign that I have been waiting for. We must all remember that I have yet to have a "symptom" of this brain tumor that would cause it to be discovered. Prior to being told that I have a brain tumor, I was out playing catch in the yard with my son and I intend to continue doing so for as long as I am able. I will not sacrifice the good times I am yet to have for a diagnosis that is yet to be "found".
I have had many people totally fight me on this stand. They believe that I am playing Russian roulette with my life and to be honest, I am. I'm taking chances no matter what path I choose. It doesn't matter where I go from here, because there are risks in both directions. However, when looking at it from my point of view, I am ahead of the game.
Think of it this way... say that I have never had an MRI of my head. Tomorrow, I develop a headache that just won't go away. I try for weeks to get it to disappear. (Yes, I'm stubborn enough it would take weeks.) When it doesn't go away no matter what I try, I finally go to the doctor. He gives me meds to try and tells me to return in a week. Again they don't go away and we repeat this cycle two or three times. Finally, he decides that we should probably do a CT Scan to see what is up there. After two weeks I am finally able to get a CT Scan and it shows something questionable but in a CT it is indistinguishable so they ask for an MRI. So now, finally, after 8-10 weeks I have been diagnosed with a brain tumor. At this point it is causing more severe symptoms than headaches and our time is limited. Furthermore, all the things I now know and the process I am now taking has to still be completed. Do you think just because my time may be more limited that I will leave my family to deal with it unprepared?
However, this scenario won't occur now. When that headache starts and won't go away, I know what is causing it and I can be in surgery within just a few weeks. I have things prepared for my family so that I can be mentally and emotionally prepared for this. Do you see where this approach allows us to be prepared yet not rush into things?
This very approach is why I've chosen to not think of surgery as an immediate option. I will listen to what the doctors have to say. I will ask the hard questions now so that I am fully prepared. I will finish the things I need to do. I will not hide from the obvious signs that God sends my way. Rather I will take the bull by the horns and do what I must.
Now I understand that many of you do not know me as a real person, but many of you do. I have asked over a dozen people how they would describe me to someone who asked about me. Some made the snide comment that I'm short but when all was serious they used words like: ambitious, compassionate, bubbly, helpful, and good natured. Note that not a one (other than the joke about being short) mentioned any physical characteristics of me. I am not a physical person. The very means of who I am is my personality and it's the first thing people remember. My personality is what makes me and it is the one thing about me that I would be most devastated to lose. The statistics of surgery are menial when you look at them in the long run, but the statistics they can't give you are, Who will I be when I come out of surgery? It is not conceivable, giving the way the brain works, that I can walk into surgery being the Amy everyone knows and walk out being that same person. Therefore, if I'm not me, then who am I?
These are the kinds of things I weighed in making my decision to wait on surgery. I know many of you have read the comment that a good friend left about symptoms when dealing with a brain tumor. Yes, I fully believe that our infertility problems are indirectly related to the tumor. Other than that, I can't honestly say that any of the "minor" symptoms that arise could convince me to go with surgery now rather than wait. Yes, if I become a total bitch and my personality changes to the point I am no longer recognizable as me, I'd do it... but that is what it would take. I am watching out for myself and I have tons of people who are looking out for me and have promised to tell me if they see something significant.
Believe me that the decision to wait has not been taken lightly. Believe me that I realize there are risks with waiting just as there are risks with doing surgery right now. Believe me that I know that there is no right answer. Believe me that, although I am not afraid of death, I am not ready to leave. Believe me that I will not be going anywhere any time soon. I have friends to hug, a brother to tease, future nieces and nephews to spoil, a husband to take care of and love, and most importantly a son to raise.
Wednesday, October 24, 2007
I told a very good friend yesterday that I had an argument with God and her reply was simply, "And who won?" I don't remember what my response was but it should have been, "We agreed to a compromise." That sounds like a fitting description of what we did.
Now some people that know me very well would take a step back at that first paragraph and call the men in white coats to come get me. Why? Well you see, most would not be able to believe that I could come to a compromise when my family's welfare are at stake. That's not what you expected me to say is it? You see I am not a fighter. Many would say I'm one of the most even tempered people you can meet. Unless you start messing with my family. You could sit in front of me and call me every name in the book and hold a gun to my head, and I would sit back quietly waiting for a moment to strike where I could not fail. However, if you did the same thing to my husband or son, I would be on you like a wildcat. The few people who have truly seen me in this state know that I'm not one to be messed with. After all, my family is my strength, my life. You don't mess with my family. So, yes, many would be surprised that I would ever compromise when my family's welfare are at stake.
However, when you are arguing with the "man upstairs", you have to know that you will not win the argument but that he will make compromises. So what happened to make me take on this battle? Well, some time over the weekend, I finally "broke". I proceeded to tell God that he didn't know me as well as he thought and that he'd given me more than I could handle. I told him I was not happy with him, that I felt he was (segment edited because I don't wish to repeat what I really said), and that I wished he'd just stop what he was doing and address this thing... After at least 30 minutes of this, I finally emotionally "broke" and apologized for my words but expressed my frustrations at what I am going through.
Finally, we came to the center of the argument and I addressed with him what exactly it was he wanted me to do. Here he is putting me in a situation where there is no right path. There is no right answer. No matter what I do, the risks are astronomical and the signs he is sending me are all conflicts. I realized that the reason he was giving me these choices is because he doesn't lay out our paths but rather he lays out a set of paths for us to choose and follow. Many times, I have chosen the difficult path and come out just fine. However, I could always see that one path was the right one and one was the wrong one so, whichever I chose, I knew what I was about to face. This time, neither path is labeled. There is no right path and there is no wrong path. The two paths are intertwined and can go either way. He has confidence in my ability to deal with whichever path I choose, even if I don't have that same confidence.
In the end, I realized that he was giving me the freedom to make my decision because he knows that is where I am strong. I announced that evening to him which path I would pursue, made him promise to take care of my family regardless of where I end up, and asked him to give me the sign when the time was right. He gave me his agreement to the argument, as I went on to meditate that evening. I fully expected my visual meditations to take on the form of a dark a dreary day since that was how I felt consciously that night. (My visual meditation tends to reflect my mood) However, instead, it was a gorgeous scene with beautiful, crystal clear waters, brilliant clouds, and serenity. I knew right then that God had accepted the compromise and he would lead me where I was supposed to go and when we finally meet, he will ensure that my family is taken care of until they feel the same peace.
So what decision did I make? I hate to leave you hanging but that's for another entry and unfortunately right now, I have other priorities to attend to. Stay Tuned.
(I had every intention on writing the second entry at this time but about three quarters of the way through this entry, I received a call from my mom. My Great Aunt, whom has been sick for some time with various forms of cancer including metastatic brain cancer, has been given less than 24 hours. They do not believe she will come back this time and honestly, as bad as she's been, I'm not sure it's the thing for her to do. Please keep her in your thoughts for a safe passage to be with God and give my family the strength they need to deal with this. Thank You and God Bless.)
Tuesday, October 23, 2007
I just contacted the doctor whom I am seeking for my third opinion and the appointment will be on this Friday, October 26th. I have heard nothing but good things about this guy so I look forward to hearing what he has to say. (Who am I kidding, I'm terrified about what he is going to say but I do look forward to bamboozling one more doc when it comes to my neurological performance.)
I've got a ton to do between today and Friday so I probably won't be out here much.
Ok, I realize that no one can truly make this decision without having to stare it straight in the face, but I am curious how my friends out here would make the decision I have been faced with. I will lay out all the details in this entry and I ask you to fill in the poll on the right hand side. Don't worry, I won't know who you are and you don't have to comment on your reasons unless you want to.
Here are the details (Note that I am basing this off of getting a third opinion that agrees with this second doctor. Meaning my tumor is half the size of an orange and he recommends surgery):
1. You have no problems that are in any way related to the brain tumor that was discovered. Furthermore, you've had six doctors now TRY to break you neurologically and can't.
2. You are a completely healthy 28 year old who has a wonderful husband and a 10 year old son at home.
3. You value your ability to go out in the yard and kick a soccer ball around, wrestle with your son, play football, ride roller coasters, and overall just live life. Your favorite past time is square dancing... all of which require that you be physically well and mentally cognitive.
4. No one can tell you if the brain tumor they've discovered will cause you problems in 6 days, 6 months, 6 years, or ever. They can not tell you how your brain tumor will affect you if and when it ever does.
5. The doctor believes with 85% certainty that he can remove the tumor in its entirety. Based on your own research, you know that even if this tumor is removed entirely, it can and WILL return.
6. The risks of surgery include 1% chance of stroke, 3% chance of death, 5% chance of paralysis. The chances of you coming out of surgery without some sort of deficit are slim to none.
7. You have problems with anesthesia that, even if they are aware of it, will complicate matters.
With these details in mind, I'd like to see what you would do and I'd love to hear your comments on it. I have been "asking" those around me these very questions and I'd like to see what you all think.
Thanks in advance.
Saturday, October 20, 2007
I hate to do this but I'm going to take a few days off from writing in my blog. I feel like I just need to step away to reflect in my own mind what is going on. As much as I have been trying to not let this new "opinion" get to me, the reality is that deep in my heart... I know he's right.
I will return in a few days once I've got my thoughts sorted. Don't worry, if anything major happens you guys will be one of the first to know.
Just in case I don't say it enough... I love all of you!!!
Friday, October 19, 2007
Well, I haven't gone over the voice recording from this appointment nor have I truly let it all settle in my head yet but here's the information I have from my appointment today.
I am not a candidate for Gamma Knife according to the neurosurgeon we spoke with today. We ended up with more food for thought than anything. (Literally...) Anyway, he doesn't believe that the "swelling" that my local neurosurgeon is seeing is actually swelling. He believes it is tumor. He believes it is still a low grade glioma but rather than being 3 cm by 2 cm, he believes it is closer to the size of half an orange or about 6 cm in size. (Cut an orange in half and you are holding my tumor) This is a significant change from what my local neurosurgeon believes.
I will be seeking a third opinion with the hopes that the third doctor agrees with one of them. Only then will I truly be able to sit and reflect on what is going on. Unfortunately, even if I don't want to, I have to feel that this guy is probably right. Where my local neurosurgeon may have seen a few hundred, this guy has probably seen hundreds or thousands more. Not easy to accept in the slightest.
Unlike my local NS, he believes surgery is the best option even with the risks. He feels with 85% certainty he could remove the entire tumor. There would be risks because there is the "motor strip" which is in the form of an artery that controls my left leg. However, he believes that with an interoperative MRI, it can be removed safely.
My current path has not changed. I will not be going into surgery any time in the near future. I stand by my decision that as long as I am not experiencing problems from this tumor, I will not be doing anything with it. However, it is time to pump up the speed in which I am preparing, just in case it does come to problems. Obviously, my mood on this will probably change 100 times but if there are symptoms that develop... I will reluctantly consider surgery.
I appreciate everyone's continued thoughts and prayers and I will continue to keep you all updated. I will probably give a better blog entry when this all settles a bit in my own mind.
Love ya all.
Thursday, October 18, 2007
Today the nerves have really begun to set in as I think of all the things that hang on tomorrow's appointment. I am trying hard to be cautiously optimistic but sometimes I find myself getting too hopeful on Gamma Knife and other times I feel that there's no point in getting my hopes up. However, I will be going into it thinking positive and knowing that if this doesn't go through, God has other plans for me. Sometimes the hardest part is waiting to find out what those plans are.
I almost have all of my paperwork completely lined up in preparation for the appt. I have a few things I need to print off that have been updated since I last put them in. Beyond that, tonight I need to remember to put spare batteries for my voice recorder into my Medical Journal, put the credit card and check book in it, add some change in case we need it, and double-check everything. I'll have John look over the directions one more time and I'll ensure I have all the phone numbers I need.
We are planning on leaving at about 6:30 in the morning and hoping we can miss the most severe of the traffic. Google says it will take about 3 hours to get there and most of the time it is a bit on the high side estimate so I hope that holds true. If it does we should have time to spare before my appointment. The nurse said to call her if we hit traffic and she'd try to get us around it. She's been wonderful and assured me that if we are a bit late it won't hurt anything.
Anyway, I have a list of questions that are three pages long so I think I'll keep them busy as long as they'll let me. :) Of course, this could be a short discussion if they feel that I'm not a candidate for Gamma Knife. There's not a lot more to discuss if I'm not. I will get their opinion on what they feel I should do but I will continue to hold on to the position that if I'm not having symptoms, I'm not going to proceed with any other procedures right now. I will just go back into research mode and look at some of the other possible procedures that I've underlined that are near research completion or in trials. I'll know all I can about them for when the time comes they may become an option.
I'm sorry this has turned into a large ramble but when I'm nervous that's exactly what I do. Oh, I do have another thing concerning the appointment. John and I talked and we agreed that if I am a candidate and they can do it without a biopsy, we will go ahead and schedule the procedure for sometime in the early part of the new year. (January or February) We will see if we can get the third opinion from the other doctor we discussed and with any luck we can get that without actually being seen. (Not sure if he'll agree to it or not but I hear some of the more sought after will.) Then I'll contact my local NeuroSurgeon and try to get in to talk to him before the procedure. Basically, I'll give him the chance to explain why he thinks I am not a candidate for Gamma Knife and if he doesn't have the time for me then I'll do it without his approval. I believe in giving chances and I'd like to hear his reasons. If he continues to fight that it's not an option, despite showing him the two approvals, I will ask the NeuroSurgeon up North if he will become my primary NS and see if the Neurologist I saw locally would be willing to coordinate my local care. I have the feeling that neither of them would have a problem with that if it came down to it. Part of me hopes we don't have to go that far and when given all the details my NS will agree that it sounds like a good option. Believe me, I will continue to watch him very closely due to other things but as long as I am on top of what he is doing, I will just gently watch for another.
Ok, I better stop now. This is turning into a short novel and if everyone didn't already know I was a bit crazy... you do now. Huggles to all. - Your very nervous blogger Amy
Ok, the long awaited for entry on MRIs. I will give as much factual information as I can as well as describe my experiences with MRIs. Please note that not all facilities may do MRI scans in the same way but this will give you a good, general idea of how it will all be done.
First, you will have to make sure that you have no metal on your body. This typically involves changing into "radiology" clothes. At my clinic these are navy blue pants and top. (Don't worry, these are not like hospital gowns that you have to worry about showing your butt. They are actual pants and top. Only problem I've found is the top is a bit low cut...) You will also be asked to remove any jewelry. Then you will be taken to a "waiting area" where you will be asked a fist full of questions about anything that could possibly prevent you from having the MRI done. Have you ever been shot with a bb gun? Have you ever had surgery? (50 or so different types they ask specifically) Have you ever worked as a welder? Etc. (Ladies, I do know that if you have a Paragard Copper IUD, it is safe to have an MRI but I can't tell you about any other type.)
They will then explain to you that the MRI uses magnets to produce images from inside your body. The MRI is painless. The biggest complaints is that you are in a relatively confined space and that it is EXTREMELY noisy. Now keep in mind, there are new types of MRIs that are not as confined but I can't give examples of this.
Finally, you will be led to the "magnet" room. Here you will be asked to lay on a sliding table. In my case I lay with my head towards the opening of the MRI. You will also be given ear plugs to try to help manage the sound, and I will say that we probably don't want to hear it without them. There is a "cage-like" device at the end and you place your head on the open part of it. They then stuff the open area between your head and the cage with foam fittings so that you head is nice and snug and you aren't tempted to move it. They then cover your eyes (although I think this is more to help those with confinement issues than to actually protect anything) and shut the other side of the cage over your head. The cage reminds me a bit of wearing a football helmet only it's just the cage and it's not resting on your head. They then hand you a "panic button" which I promptly move away from my hand and hold on to the cord instead so I don't hit it on accident. Finally, the table moves into the machine. How tight is it? Well, to be honest the machine is within bent arms reach when you are inside the machine. I'm not sure how else to describe it and I'm lousy at judging sizes. Basically, I can raise my hand slightly and touch the top of the machine.
Anyhow, after putting you in position they start tests. Each test runs from 30 seconds to 5 minutes (or at least that's the range for the protocol I get). After each test is finished they ask you how things are going before starting the next. It is critical that you remain as still as possible why they are running the scans so that it doesn't distort the images in any way.
So what is the test like? Each scan has a different feel and sound. Some are very loud and "obnoxious" as I call it. One of the scans is actually so quiet it nearly put me to sleep during the scan. It's just a long low humming and the machine "rocks" a bit so it was like being rocked to sleep with a lullaby. They are sure to wake you up with my all time favorite, however. I think it's one of the shorter ones at about a minute but it sounds like Star Wars is battling a jack hammer!!! It's actually hard not to break into a smile during this one if you think of it that way.
For me, since they have to do contrast, after they do 8 scans they pull me out again. They then search for a vein and inject me with a contrasting agent called gadolinium. (The only difference between this and giving blood is they are putting something INTO your bloodstream instead of taking it out.) My understanding is that gadolinium will work its way through your body and "highlight" the scans some because it reacts to the magnetic pull in a different way. In my case with the brain tumor it tells us if it has malignant tendencies or not. If the tumor enhances after the contrast, then it is likely turning malignant.
After the inject you, they put you back into the machine for a few more scans. For me this number is three. After the first part, this seems like such a short time.
After it is all done, they pull you out and you are free to leave. That's really all there is to it. I know that I had several questions before my first scan, not necessarily about the MRI but about the contrast. Many of the things I saw online made it sound like they give you an IV drip to give the contrast. Now maybe some do, but at my clinic they do not and it's proof that they don't have to if you have the intense dislike of IVs like I do. (I don't mind them if they are giving me pain meds, gonna knock me out, make me feel better, etc... I do have a problem with them being in me when I'm perfectly healthy and have too much time on my hands to think about it!!!)
I know that my other concern was that, although not claustrophobic, I'm not a fan of enclosed places. I wasn't sure if I'd be able to get through the MRI with my head in there. Honestly, unless you are just being interested in the surrounding, you don't realize it is confined. They cover your eyes and you really don't realize what is going on inside.
Alright, I think that is enough details. If anyone happens to come across this with questions on an MRI and still has questions, send me a comment and I'll try to answer it.
Wednesday, October 17, 2007
Ok, so my MRI was moved up to yesterday instead of Thursday. It appears they had a possible scheduling conflict and didn't want me to have to wait around Thursday so they had a cancellation and moved me in. Of course, this didn't bother me any because now I have a chance of getting my radiology report before the appointment on Friday.
Anyway, the only proven fact I have from this MRI is that there is proof of a brain up there. The brain matter is there, appears to be healthy, and since I'm functioning must be doing its job. :) I was able to get my scans, however, and although I can not see the infinite details, there does not seem to be any change. If you compare the two scans side by side, they appear to be exactly the same so I think we are good this time.
I will follow-up either today or tomorrow with my promised detail description of an MRI.
Tuesday, October 16, 2007
I received a call from Radiology and my MRI has been moved from Thursday to today at 2:00. It works well for me because then it will give me time to hopefully get the radiology report from my doctor prior to going to Chicago on Friday. It will be nice to have the results and reading from both tests going into it.
I will try to post again later on what I find. Hopeful thinking for no change in the area of the tumor and that there continues to be no enhancement with the contrast. (enhancement means malignancy)
As soon as I was diagnosed with my brain tumor, I knew that I was not ready for this diagnosis. I know, no one is ever ready to be told they have a brain tumor... that's not what I mean. I mean that I realized that I was very unorganized when it came to my health and there was a lot of things missing in my paperwork that needed to be completed... just in case. In case you don't know me, I hate to be unprepared for anything.
So the very first thing I did on Monday, after being diagnosed, was go to Walgreens and get a trapper keeper. The biggest one I could find. It's a nice one with a simple velcro closure and plenty of space for things like pens, highlighters, etc.
Now this didn't all appear at once. I have modified the layout of this journal many times but for the most part, here is the current product. There are two different types of tabs. Primary tabs are actual tabs that are meant for a three ring binder. Then I have Secondary tabs, which are movable and are simply a piece of white paper, hole punched, with a tab sticker. It works and it keeps things organized.
So what are my areas? I will give a brief run-down and description and some other time I'll give more details.
Primary 1 - Quick Find Information [Secondary = "To Give To Doctor" (copies of records, updated contact info, etc); Scripts (for bloodwork and tests); Medical Journal; Blog printouts]
Primary 2 - Legal Stuff [Secondary = Documents (Living Will, Power of Attorney, etc.); Document Info (Instructions on legal documents]
Primary 3 - Insurance Records [Secondary = Medical visit record (includes checklist for obtaining records, copays paid, insurance approvals, etc.); "Visits in limbo" (things I'm fighting a doctor or insurance on); Pre-certs
Primary 4 - Medical Records [Secondary = Primary; Specialist; Labs; Radiology]
Primary 5 - Mental Health
Primary 6 - Basic Information [Secondary = My medical history; Doctor Information; Family Medical History]
Primary 7 - Brain Tumor Section [Secondary = Questions; Research]
Primary 8 - MISC Records
Primary 9 - Correspondence (Record of all correspondence between me and doctors)
Primary 10 - Herbal/Alternative
That's it for the most part. All of the records that are created by me, live on a jump drive and are updated and printed each time they are updated. This keeps it easy to fill in the endless questionnaires at doctor's offices, ensures all my information is correct, and keeps me sorted out on dates things occurred. (Although some dates will never be forgotten.) This also allows me to have my "to give to doctor" section and print off things that are of concern to them instead of having to relay it all. I know multiple doctors have loved my questions because they are all printed and we can both be reading them together.
I don't know if this will help anyone but I hope it gives some ideas on creating your own medical journal.
Monday, October 15, 2007
My husband John works on John Deere combines and tractors. Therefore, this time of year is mighty hectic and I never know what time he will make it home. Last month he put in 100 hours of overtime in four weeks and that's not counting the numerous calls he received on his Sundays (his day off) that I had to screen. Don't get me wrong, the paychecks are awesome and they make it worth it but it gets old having meals ruined because he ends up late and having to handle everything inside and out by yourself because he's not home. To top it all off, harvest started at about the same time as my diagnosis so it's been rough emotionally as well. Anyway, last week he was actually home by 6:30 all but one night so that was something to cheer about since for three weeks previous I hadn't seen him before 7.
He is looking forward to being home at night as well as a day "off" on Friday to go to Chicago. Pretty sad when you consider that a day off. LOL
I also can't wait for the crops to finish getting in so some of the dust dies down and my sinus is able to clear itself and hopefully keep from getting into a full blown infection.
Ok, for some reason this feels like a boring blog entry so I will stop while I'm ahead. I have so many ideas running through my mind to blog that I'm not really sure where to go next. However, I know I have promised details on my "Medical journal" and on the MRI so I will try to write about my journal tomorrow and my MRI on Thursday since it will be fresh in my memory. I'll come up with something for Wednesday and if I can finish putting up spider webs, it will be halloween. We'll see how that works.
Ok, I'm rambling again. Huggles
Sunday, October 14, 2007
... and checking it twice but it's not to find out who's naughty and nice. :) Ok, so I'm in a bit better mood today than I was yesterday. This is surprising since I have such a sinus headache I've barely been able to see straight all day. For as long as I can remember I have suffered from Sinus infections and usually I just shrug them off an eventually get medication if I can't defeat it. However, my trigeminal is keeping me on my toes with this one. You see, it goes through phases where some times it is numb on the right side and other times it is heightened sensitivity. Therefore, there are times that the sinus pressure causes such a headache I can barely see and other times I can't even feel my nose let alone my sinus. Oh well, it's keeping me honest at least.
Ok, back on target. I've been working most of the day to make sure I have all the paperwork I can think of to take with me to Chicago on Friday. I've got copies of my medical records, a sheet that has all of my medical information summarized to give the doctor, three pages of questions to go over with him, all my medical cards that need to be given to them, my medical journal for going over anything that may be suspicious, and my calendar of dates so that I make sure and give all the right information to them. They will probably think I've decided to bring in a small filing cabinet with me but in reality it's a big help to have everything in one place and sorted out. It makes me feel like I have control over at least a little bit.
Anyway, I have a list of five general questions for him. (Similar ones that I asked my local NS but I have refined them.) I also have eleven general questions and seventeen "dependent" questions for him about Gamma Knife. Of course, none of these will matter if it is determined that I'm not a candidate, but I have them just in case. I also have a list of questions about a biopsy if it should happen that it is going to be required before they consider Gamma Knife an option.
It will be a long and tough decision if they tell me that they won't give me an answer without the biopsy. My biggest question, if they tell me it is a requirement, is what will it change? If there is no difference in what they can and will do, why bother with a test worse than the danged procedure? I realize that they want to know the exact details of my tumor. What they have to realize is that I don't give a dang what type of tumor it is. It's an object in my head that doesn't belong and may possibly some time in my life cause me problems... but it isn't right now. That's all I really care about. When the time comes that it starts giving me problems, then invasive tests may be in my list of options. For now, I really don't care what is in there as long as it stays put and doesn't try to grow. All I can see the biopsy as right now is an excuse to try to talk me into other procedures and they have to realize there IS NO SUCH THING AS OTHER PROCEDURES RIGHT NOW!!!
So you can see that I may have some battles before me even if the news is favorable on Friday. Will I decide to agree on the biopsy if it is a requirement? I can't honestly answer that right now but I will tell you that it will take a very good argument from them to convince me of it and A LOT of soul searching. I don't believe in unnecessary tests... especially ones that require more than a simple blood test. If the test doesn't clearly benefit the outcome, what is its purpose? They just have to remember that Gamma Knife is THEIR only option right now, regardless of what a biopsy shows or what they suspect it may be in change.
Ok, time to shut my mind off so I can get to sleep. Night
Saturday, October 13, 2007
and their strength and love preparing me for this week. I really wish you all realized how much it means to me to have everyone standing beside me as I go into this week. A lot could go right but so much more can go wrong and just knowing that you all will be there to help lift me back up or to celebrate with me, means more than you will ever know.
Some time over the past week I made some realizations that apparently hadn't yet set in. Some were probably just so obvious that I didn't bother thinking about it that way. Others, I realize I hadn't really allowed myself to think about. So what are these realizations?
Well, first I realized how much I value my mind. Now this one was probably just an obvious one that I wasn't paying attention to but it hit me head on while reading a post on a group of those with brain tumors. It came a bit out of no where as I read the struggles of one of the members and their journey to learn to spell again after completely losing the ability. I thought to myself that this would be horrible and that the only thing worse would be losing my ability to remember. The more I thought about it, the more I realized that these very things could happen to me. This brought along the dead obvious thing. This is exactly why I've made the decisions I have AND why I have said that I would rather have a shortened life than one without my mind intact. I made a point to again discuss with my husband my wishes. To me, I feel this is one of the worst things in the world that can happen to someone... especially one that loves knowledge.
I finally got through that realization, only to have another one hit me over the head when reading a blog. No matter how many advances are made in the treatment of brain tumors, at this time a Glioma is a terminal illness. It will never go away even if it appears to. It WILL come back and I will die with it if not from it. This could be no problem for I may never have problems from it, but it could also end my life early. Now, you have to realize that I have fully accepted that this thing will likely take my life some day and that it will probably be sooner rather than later. The realization I had was that I have a terminal illness. Does this change anything I'm doing? Not really but it was something that can take you by surprise all the same.
Anyway, as I struggled to step above this and continue to focus on the tasks at hand, I read messages from my friends who poured love and prayers my way. Some, I have never met, yet the strength I get from them is amazing. In case I don't say it enough, I love all of my friends and I wish you all peace and happiness. Thank you for everything.
Friday, October 12, 2007
... before the age of eight. This story will be one more in support of getting your medical records as early in your life as possible. I highly recommend it. Adults... this means now. Parents... this means get your child's now.
Anyway, so here's the story. Yesterday I had finally received my medical records. In looking at them, I discovered there are no records there for the time before I was married. No big deal. My previous doctor still has an office so I called over there and sure enough I could pick up my records today. Great!!! I knew as soon as I picked it up, something was missing. It was just way to light. So what's missing?
You see, here's the story. My first pediatrician was a wonderful doctor. I saw him through my struggles with tonsillitis, both allergic reactions (penicillin and codeine), my problem with anesthesia, the early history of shaking issues, etc. Unfortunately, he decided to retire. My records were transferred to another doctor. We were with the second doctor for two years... during which he attempted to kill me three times prompting my mom to change doctors again. All of my records were supposed to be transferred to my new doctor. He said they were. Mom believed him. So what's the problem?
Well, apparently his idea of sending my records was to write a one page summary giving my birth weight, immunization history, and a barely legible note that I had an anesthesia disorder when I had a T&A on 11/81. (Tonsil and adenoid) This was all he sent to my doctor. None of the records about my allergies. Nothing about the two neurologists I was sent to about my shaking. No history of why I had surgery and what the outcome was. NOTHING. Now I can understand sending a simple summary such as this for a child whose worst problem is an ear infection but not for a child whom probably had a thicker record than a 20 year old!!!
So anyway, all my medical history prior to my 8th birthday is now gone. (I haven't fully given up but I'm guessing it's been long destroyed even if I can find the doctor all the records were transferred to when he retired.) I don't know that there would be anything in those records that could shed some light but I can't help but feel like a part of me is missing without them. That small chunk of my life that now can only be recalled by my family and that's assuming their memories are up to it. I now may never know if my shaking disorder as a child was in any way related to my tumor. I guess there's worse things... it just really sucks right now.
So again, I plead to those of you out there... Get your records in order now. Contact your doctors while you know where your records are. If you have kids, get them a file started. It just might save a lot of headache some day.
Thursday, October 11, 2007
Ok, well not really but in this case I was nice and calm and prepared for next Friday until I received my medical records from my neurosurgeon. UGH, is all I'm going to say as I sit here extremely pissed. At least from this point forward, I will be requesting the updates at the time of the visit so there won't be weeks of relying on questionable data again.
So here's the scoop. Today I FINALLY received my medical records that I requested 6 weeks ago. I quickly found out that they don't include the MRI scans that I really need but that's been sorted out. For those who may be going through the same thing as me, you have to request your MRI scans separately from the radiology department. Records will not provide the copies of your scans.
Anyway, so I review through my records to see if I can find any inaccuracies and to make sure I've located all the information that I'm particularly interested in. Well, I find a very interesting inconsistency right off the bat starting with my very first appointment with the neurosurgeon. John and I both remember him vividly stating that he would not operate on it on someone my age, based on its location. Is this what he wrote in my records? Hell no. His words, "I have recommended that she consider an image-guided biopsy to try and determine a diagnosis. It may be amenable to resection, depending on grade, if this tends to be a glioma." Does that sound anything like what he told us?
I have my theory on why he said it and it doesn't please me one bit. In my record with my GP, it was indicated that I was insistent that surgery was not an option. He saw this. He knew that if he came out saying that surgery might be an option, he would lose me for any and ALL tests. Interestingly enough, even other records from phone conversations, continue to lead to this "surgery is not an option" approach. Why do doctors see someone, who they know wants the truth with no punches pulled, and insist on giving us what we want instead of what they really think? It annoys me, because now I really question whether they will even consider Gamma Knife for me if I am indeed a candidate for surgery. Doctors, of course, would much rather operate and "remove" it then do something that in the long run is better for the patient. (Mentally as well as physically in this case.)
I also find a kick out of the "Recommendation". He states in there that he talked about the risks of surgery including bleeding, infection, and anesthesia. Funny enough the only thing we recalled about the "surgery" (which I'm assuming is the biopsy since he said surgery wasn't an option) was that there is a less than 1% chance of anything going wrong. Again, he contradicts himself because even in their notes on the phone conversation when I asked about the biopsy and symptoms, he states that there is little chance of problems from it... yet there's this chance of bleeding... infection... argh. Can you tell I'm pretty pissed off right now?
And just a side note, from this point forward I am going to be asking for the permission to use a voice recorder in all future doctor's appointments on this subject. Then that way when they try to say that's not what they said...
Wednesday, October 10, 2007
Even before the diagnosis of a brain tumor, I knew that I really needed to work to get back into shape. When I was younger and in school, I was always "large" but I was also very active so I was extremely muscular. I remember I used to lift weights in PE and loved playing things like badminton, hockey, or football. However, after I got pregnant with my son, I let that all fall to the wayside. This isn't to say that I became all flab, but things didn't come as easy and the muscle I used to have was replaced by "not as much muscle".
Now you have to realize, that many people around my place of work thinks that I am relatively healthy because I'm always "on the move", carry computers around like they are rag dolls, and seem to never lack energy. However, I know that I am not that healthy and that the things I do now are not even a drop in the bucket to what I used to do. I've disliked this part of me for some time and did actually do something about it two years ago when I dropped 30 pounds, but I'm still not satisfied.
Something I have done inconsistently for about three years now is walk. When I originally dropped my 30 pounds, I was walking about five miles a day according to my pedometer. This was at work walking as well as walking I did in the evenings. Well, I'm sure I still do around 3 miles a day at work but I pretty much ended my after work walking. A neighbor and I have gotten back into the habit of walking at night... if only it were more consistent. With my son in soccer, after school things, us in dance, nights at my mom's, them camping over the weekend, etc it becomes difficult to do it consistently and once you've walked with someone, the motivation just isn't there to walk by yourself! However, when I do walk with my neighbor, we walk 3 miles. It feels good and we keep a really good pace. I think my problem is just that I need a goal or reason to become more consistent with it. Anyone have any ideas?
Tuesday, October 9, 2007
Ok, I'm in a venting streak today. It was on August 30th that I requested my medical records. Guess what I still don't have? Anyway, I contacted the records department today to find out the holdup. (Legally I could sue because they did not complete it in 30 days but I really don't have the energy for that endeavor.) Well, it appears that my general doctor is the holdup and hasn't yet submitted his stuff. I love my GP dearly but some days his office can truly annoy me completely. Maybe it really is time to think about changing doctors whether I really want to or not. Not only is this a strike against his office but he made some poor decisions in the past that caused a lot of unnecessary headache (This isn't even counting the mistake with the size of the brain tumor.) I don't know, I guess there may be a few doctor's who need replacing in the next few weeks.
Oh speaking of brain tumors and doctors... can you believe that his office charged me and my insurance for the appointment when he told me I had a brain tumor? For all the good the information he gave me was, I would have just as soon heard it over the phone and saved the $15 copay. That is truly annoying but too late now.
It's sad when I'm so ticked that I can't even keep a post flowing smoothly. Maybe I better wrap this thing up and try and get some hot tea or something. I really need to calm, I can see that my blood pressure is a bit up. (Yes, I can see it, my arteries/veins are standing up on the back of my hand and that only happens when it is up. They aren't throbbing yet though so it's not dangerously high.)
Monday, October 8, 2007
Sorry if this entry is just a hodge podge of things.
First off, I've been working with a dear online friend of mine on coming up with a customized layout for my blog. I'm really excited about it and I can't wait to see the finished product of what it comes out to. Her and I seem to have a lot of the same likes but she has the "technical experience" and I don't. I have my likes, it's putting it all together that I just can't do. To think that her and I would have never "met" had it not been for the beauty of the internet. She and I have a lot in common so we just "meld" so well. Oh and for those looking for someone to blame for the most boring blog on the internet... it was her idea that I start one. (Sorry Kat couldn't resist. Love ya!!!)
Second order of business is that I would like to send another congratulations to my best friend on the purchase of their new house. It is absolutely fabulous!!! It's large, has gorgeous lines, and I must say that I'm jealous of her kitchen!!! (I hope you don't mind if I steal parts of the design of your kitchen in say... 10 or 15 years...) Congratulations, Jessi and family!!!
Speaking of candlelight tour... John and I celebrated our 11th anniversary on Friday by first going to a soccer practice (real romantic eh?) then going to a local tourist attraction where they were having a candlelight tour. It was absolutely fantastic!!! I would highly recommend it to anyone. (To avoid giving details on where I live, I'm choosing not to give too much information but if you are truly interested, leave me a comment and I'll give some details.) Anyway, it was a pioneer town and the paths were lit with REAL candles. Just amazing. I think it will become a new anniversary ritual for John and I.
As we're moving to less than two weeks to the big consultation, my nerves are starting to find their way into the open. There is so much question hanging on this one little appointment. I'm not fully sure what to hope for at this point because I don't want to get my hopes up too far. However, I'll admit that I'm optimistic about it. I think the whole nerves thing got me on a bit of a psychological melt-down over the weekend. (Not that anyone would know because I always hide my feelings very well.) Anyway, I thought a lot about what may be in my future and the path that is laid out before me. So many things could happen but ultimately they all lead to the same thing... It's not going to be easy living with the knowledge I have a brain tumor. I just keep reminding myself that God doesn't give us more than we can handle. It's not the road I would have chosen, if given the choice, but sometimes he has to keep me on my toes because I get in a rut.
Ok, that's getting a bit... errr down so I'm going to stop while I'm ahead. Just remember, live each day to the fullest, hug and kiss your babies often, make sure those special in your life know just how much, and last but not least cherish every precious second!!!
May God bless you all!!!
Sunday, October 7, 2007
Ok, I've added a few pics around my blog and in particular on the entries for October 5th. However, in doing some poking around I found some more pics that are definitely my paradise.
The Sunrise on the left was taken on our property overlooking our land.
The flowers is from my old house and is one of my favorite landscaping set-ups that I've had.
This is my son, carving his first pumpkin. I don't think he's working hard on it do you?Last but not least. With the man himself... Phil Vassar.
Saturday, October 6, 2007
Recently, I was blessed to receive a comment from a man, a complete stranger from Amsterdam. At first it shocked me, so few people have left comments in my blog that I had never expected to receive one from someone I didn't know. However, speaking of my paradise and the beauty of this time of year, inspired him. I promptly, being the type of person I am, checked out his blog and left him a comment in return. Isn't that how blogs grow, you visit mine, I'll visit yours and we both feel good about the comments? I also found out that his wife had suffered from a Brain Hemorrhage earlier in the year and is currently doing great. That lifted my spirits on a day I was feeling a bit "down".
Apparently, I had made as much of an impression on him as he and his wife had on me. (Yes with just a few short comments between us.) I was surprised, yet honored to check out his blog, The difficulties of an irishman, the next day and see a picture of my family on his latest entry. He had blogged about the the ability of the internet to connect us to those that may be several hundreds of miles away. Everything he said in his blog was true.
Some of my most cherished friends are those whom I have never met or whom I met not at a bar but online. The internet has truly made the world a smaller place and allows us to do things that generations before us could never even dream of.
When I first started this blog, it was to help keep my cherished online friends up to date on what was going on in my world. I guess what I didn't realize is that my story might actually inspire others and that I would meet new friends along the way. Actually, I shouldn't say that, I did indeed hope it would do that but never actually thought that my words would succeed. To all my cherished online friends both new and old... I wish you well.
Friday, October 5, 2007
Yes, this is our eleventh anniversary not tenth but I wanted to share with you how we celebrated our tenth anniversary. You see, John and I and our son all enjoy an online community/game called puzzle pirates. It's really quite a brilliant game and we have met a lot of very special people through it. Well, although not giving any special privileges, we thought that having our pirates marry in the game would be a fun reason to celebrate and give us the opportunity to renew our vows in a fun environment. So, on our tenth anniversary, we renewed our vows as our pirates DreamCatcher and DeereSlayer (he works for John Deere...) wed.
The ceremony was written and officiated by our monarch and dear friend, Limeysmum (Mum). The special vows we share were written by us.
To place the scene, we are on a small yet beautiful island surrounded by a dozen of our closest pirate friends. DreamCatcher is wearing a white dress with aqua edges and a head piece made of white flowers. DeereSlayer is wearing a white dress outfit with aqua edges and looks mighty sharp if I should say so myself. Our son Jazer joins us at the side.
coughs to clear throat
We are gathered here today,
to renew the union of this Rapscallion and this wench,
in unlawfully wedded matrimony.
If any o ye object to such a union,
Ye be 10 years too late.
Speak now so Jazer can stab ye with his blade.
Turns to DeereSlayer
Do ye, Deereslayer,
continue to take this wench,
in victory or defeat,
in Scurvy and in Shingles,
for booched or for incredible,
as long as ye both shall sail?
Turns to dreamcatcher and smiles
10 years have passed since we said I do
And I stand before ye today to show me love is still true
Weve weathered rough seas and enjoyed the calm
And I will fight beside ye with a sword in me palm
To the end of our sail I’ll be true blue
And never stop giving all me love to you
Turns to DreamCatcher
Do ye, Dreamcatcher,
continue to take this rapscallion,
in victory or defeat,
in Scurvy and in Shingles,
for booched or for incredible,
as long as ye both shall sail?
Takes a deep breath and stares upon Deere’s deep blue eyes
Ten leagues back, me spoke of love and tis meaning.
Me was a green wench back then fer it is many incredibles more beautiful
and no ultimate can compare.
As we continue to travel the ocean of life,
Me will continue to give ye all the sails tokens I can manage
and shall that carry us to that lovely blood.
Me will follow ye into any battle with sword a drawn
Or fists clenched.
Shall our chosen colors always mesh.
Love ye ferever
Ye may now both disable your DND for a trade request.
With this ring, I do trade.
By the power vested in me by Yohoho and the flag Limelight,
I now pronounce ye Pirate and wench.
Ye may kiss yer mate.
jumps in for a group hug
Love: Some people see love as simply a word that comes between “I” and “You” in a sentence.
Love: Some people see love as an infatuation that can only be met with the most handsome man or the most gorgeous woman, who has lots of money, a nice car, and a big house.
Love: Some people do not believe it exists, because they have been hurt by what they thought was love.
I feel sorry for those people. For they shall never know how my heart beats uncontrollably when I hear your voice. They shall never know the overwhelming sensation that surrounds me when I look into your eyes. And they shall never know what it’s like to have the strongest force in existence constantly surrounding you.
Thus far we have traveled two separate roads. Today our two roads are going to combine into one road that we will travel together forever. Yes we are going to have many obstacles to overcome, and we are going to make left turns when we should have made right, but if we stick together and work things out we will be stronger than ever before.
It is a well-known fact that a tiny seed, when planted in the ground and properly nourished, can grow into a large and beautiful tree. However, it is a little known fact, that there is a seed planted in the hearts of two people, that when properly nourished, can grow into a love so strong it can never be broken.
Like the colors yellow and blue make the color green, today you and I shall combine to make us.
John, I love you and I forever will.
(I know at least one line in the above speech should sound familiar to a friend. Does that ring a bell Heather?)
Saturday, October 5th, 1996 was the single greatest day of my life. That was the day that I married my best friend and the man I wished to be my life long partner. We parted ways on October 4th less than an hour before midnight. Afterall, it is bad luck for a groom to see the bride on their wedding day before she walks down the aisle.
The next morning I was ushered into a little dressing area in the church where my Maid of Honor (My Best Friend) and my bridesmaid (Another good friend) did my hair and make-up. I wish I had half the talent at doing my hair. I am not to shy to admit that they did a great job and I looked beautiful. (I will try to post a picture but very few of my wedding pictures turned out... lesson learned, spend the money and hire a professional.) The whole time we were back there I was nervous, not because I was going to get married, but because I was hiding something that I knew would shock everyone. (Nothing like a little suspense eh?)
Anyway, it was finally time and my party led the way. It was our understanding that they would change the music to "Here Comes the Bride" after everyone was at the front and in place. However, they were waiting for a sign from us to start the music. So my dad and I stood in the hallway waiting for them to play the music. This lasted for several minutes before they finally changed the music and we walked down the aisle. The moment my eyes met with John's was the most amazing thing. Immediately any nerves I had were dissolved.
Ok, the shock. I had told the preacher, without anyone else knowing it, that I had a special speech that I'd like to give during the ceremony. Shortly after beginning the ceremony, he gave me my cue. The whole church became quiet as I confessed my love. (I'll post the speech in another entry) I know some admitted they fell into tears and others were just shocked at it all. All I was doing was confessing exactly what I felt.
We then said our vows, exchanged rings, lit the unity candle, and were pronounced Husband and Wife. We had a little reception at a local club. It was a good time and I have lots of fond memories. For instance, let me see a show of hands of all the brides that have caught their own garter. *Looks around as no one raises their hands and raises her own* Seriously, I did. John threw it and it landed on a thin line that was running across the area. The boys tried grabbing it and knocked it off right to me. Then there was the fact my Best Friend caught the bouquet so her boyfriend (who was the Best Man) ran and hid before the garter was thrown so that he didn't catch it. Which brings me to the Best Man speech...
I honestly can't remember all that was said in the speech but the part that stands out to me is that right before the speech, I told my Maid of Honor that it was going to be difficult to toast. You see, I am exactly five foot. John is six foot three. We're not exactly made for a locked arm toast. Well, the Best Man thought of everything!!! He had decorated a milk crate with pretty white lace that put me just the right height for a beautiful locked arm toast.
The first dance was so amazing. I remember looking into his eyes the entire time "Wind Beneath my Wings" played. It had to be obvious to everyone present that we were deeply in love.
Oh, the best part of the reception... It seems like it is almost tradition that the bride and groom make sure that cake gets smeared as much as possible on the others face when they have the first piece. Well, John and I decided to take that one step further and rather than smear it over each other's face, we would turn and get our Maid of Honor and Best Man. Well, what John didn't know is that my Maid of Honor and I had agreed neither of us wanted to mess up our make-up so when I was supposed to put it in her face, I turned and got him just as he turned back around. I did end up with icing across my face after he realized what happened but it was all fun. Now that I think about it, I think it was a clever trick by my Maid of Honor because she was the only one without cake on her face!!! (I still love ya Jess!!!) After we got all the giggles out of the way we did it properly to tons of oohs and aahhs.
We finally were able to sneak out of the reception and we went to our new home to change clothes and for him to "carry me across the alter". We had to be cautious though because I was pregnant and we didn't want to cause any problems. His dad informed us that a new bride is not allowed to make the bed the morning after her wedding so he had gotten us a nice hotel room at a local hotel in town. (We didn't have the money for a honeymoon so we waited on that.) That night I think both of us were sound asleep by 8 PM and I don't think we had left the reception until 6!!!
The last thing that our wedding day has to include even though it's not the greatest thing... The next morning we woke up and enjoyed a quiet morning at the pool. Shortly after we returned to our room, we received the call that our car had been broken into overnight and they had stolen John's cd player. It wasn't exactly the way we wanted to start our married life together but it was just the first obstacle we knew we'd face and overcome together.
It doesn't seem possible that it's been eleven years now since John and I was married. I remember it all like it was yesterday. It really was a very special time. The beauty of being married for eleven years is that although you now know all of your partners little quirks and can often finish their thoughts, you still learn new things about them on a daily basis. I think that's part of what makes a marriage work, that you forever try to learn more about your partner.
We were at a wedding not long ago and they had a "generational" dance. You know the ones where they start the dance and then count down, "all those who have been married less than five years sit down, etc..." It felt weird that at the 10 year mark there were only about a dozen of us still standing. I think it says a lot about marriage in this age. There are so many less that hit each milestone. I often wonder why that is, but alas that is for another day and another time because my feelings on this are very strong and I do not wish to put a damper on this day for it should be a celebration.
For those that don't know, I was married at the age of 17 and John was 21. It was a marriage "doomed to fail" because the odds are not in favor because of our ages. I like to believe that I've proven otherwise and that teen relationships really can survive as long as both parties are willing to put a little time, effort, communication, and compromise into it. Don't ever count someone with the right determination out of anything.
Well, that's all of a download for now. I will add a few more entries today as I remember my wedding day and share a very special speech with you. Have a great Friday everyone!!!
Thursday, October 4, 2007
Well, when I was younger, I used to challenge myself to write whenever I could. A product of that were many short stories and poems. Most of them I wouldn't share today if you paid me a million bucks, but some I do cherish a bit more and it is obvious a 13 year old didn't write it.
Although not one of my best works, the poem I am going to share today was written shortly after I was married. With John and I's anniversary coming up tomorrow, I figured it was a good time to share. Tomorrow I will share with you what I feel is my best writing; my wedding speech.
The hours tick down
As that magical day
To The Biggest Day of Your Life
Sleep is light
And distractions are frequent
For each minute that passes
To The Biggest Day of Your Life
Your mind wanders
Does it go here or there
This way or that way…
Will we get this done
For The Biggest Day of Your Life
The final jitters are here,
Your palms sweat,
Your legs shake,
And your heart skips a beat
On The Biggest Day of Your Life
You can’t remember your name
Let alone left or right
You take a deep breath and wonder,
“What am I doing!?!”
On The Biggest Day of Your Life.
The tears fall from your eyes…
You remembered your name!!!!
The preacher pronounces you: husband and wife
He kisses his bride
On The Biggest Day of Your Life.
Wednesday, October 3, 2007
Well, it seems I'm coming down with my first sinus infection of the year. Monday I could feel the "tickling" sensation up in my sinus and yesterday the complete and total fatigue came along with it. Today, there is definitely pressure in there but I'm not exactly sure what all is going on. See, I still can't feel anything consistently on the right side of my face and that is typically the side that "stuffs" up first. I don't think I'm clogged yet but I'm not really certain. I was really hoping that the numbness would be gone by the time this time of the year rolled around just so I didn't get into this scenario.
Anyway, I'm taking my nasocort religiously and I started on a bit of dayquil to go along with it. I went home early yesterday and slept about three hours in the afternoon. That helped tremendously as well. Tonight I will probably go to bed early, with my good ole vaporizer and hopefully I can kick this thing out before it takes too big of a hold.
I love October. I hate allergies. I hate Sinus Infections. I love October. Ironic isn't it?
I've been a bit down and gone into a complete thinking mode of late because of a conversation with my Chiropractor. I saw him earlier in the week for the first time since I saw the NeuroSurgeon. (We had talked on the phone about what happened at the doctor but we haven't actually seen each other.) Needless to say, I left his office with a ton of "food for thought".
John had seen him prior to this, so he was aware that we were researching into Gamma Knife. However, it appears that John hadn't told him about my decision to stall on the biopsy. I could tell that this took him by surprise. I must say, he was a bit disappointed with my decision even if he assured me he was sure I had my reasons. He went along the same lines as John did the very first time I brought it up, "wouldn't it be better to know." Although I was honest with him and told him I felt that the NS was CYA, he thought there was probably more to it. He said we see specialists, that see this many times, for a reason... their experience. I'm not saying I disagree with this but I also am still not certain that now is the time to do this. (Keep in mind, with my history, surgery is always a risk and any chance of problems at this stage is too much.)
You see, as I have said time and time again, I am not your typical 28 year old. As a preface for what I am about to say, I love my husband, I love my son, and I love my friends and I would do anything to have them in my life forever. Ok, with that said, I'm not afraid to die and if given 10 years to finish raising my son, I will receive it with open arms. Some may call that selfish but try to look at it from my side for just a minute:
I have a brain tumor. When and if this thing ever starts causing me problems some of the symptoms will be as follows: Seizures and left side paralysis... Those are the two that I am most worried about for this explanation. Now either of these two things will do a number of things. I will no longer be able to work, which means we will be losing an income. Doctors bills, medication, and who knows what else will rack up the dollar amounts which will make it even more of a struggle. With either of the things, I will be a huge burden on those around me. I will likely be unable to drive, possibly unable to walk and care for myself, and will have to rely on those around me to take care of me.
For me, the worst thing is being a burden on those I love. Yes, they will tell me until their face turns blue that it would all be worth it to have me there with them, but that whole scenario is unfair for everyone involved. It's unfair for my husband who would have to be my main caregiver, unfair for my friends and family that would have to watch the decline, and unfair for me who would have to "live" with these issues. I'm sorry but there is a time when a person is no longer "living" but rather existing. So from my point of view, dying is a release to all of those involved. My family would have grief for a short while as they mourned my passing but it would get better and they would move on. If it does become long and drawn out, the struggle, the pain, and the grief would be unnecessarily drawn out, all for it to be the same outcome in the end. No one lives forever and I don't plan on being the first.
So at this time in my life, I am simply wanting to delay the inevitable for a minimum of 10 years. By then, my son will have moved on, maybe even found him someone to take care of him in the form of a wife. That's my primary concern. I have said this time and time again, "I would love to dance with my husband at our 60th wedding anniversary, but if it isn't meant to be, I know he will be ok and he will find someone to take care of him."
In conclusion to this post, I do respect my Chiropractor's opinion and that is why I did some heartfelt thinking on this again this week and visited the decisions before me. However, I have returned to my original conclusion, it just isn't worth it right now. In ten years if they truly think it would benefit me and we could stop this thing before getting me into the above scenario, I'll consider the biopsy, but for now it's just not a risk worth taking. I realize others would have a hard time just "walking away" from this unknown foreign object in their brain, but I honestly have no desire to know and if there is nothing we are able\willing to do for it, why go through this unnecessary procedure. I really don't think I need a "hole in the head" right now.
Tuesday, October 2, 2007
Well, paradise can be many things to many people. The picture to the right is a small token of my paradise. The picture is taken from my front porch on the night of the harvest moon this year. John came home that night saying that it was beautiful and he was absolutely correct. You can see that the clouds are moving towards it and gives a perfect October eeriness about it.
October is perhaps my favorite month because of the beautiful colors of the trees, the cool yet not cold air, and the beautiful scenes such as the picture above. Not only that, October is the month of Halloween and it is my favorite holiday. I will probably attach more pictures of "my paradise" throughout the next few years.
I'll leave you with one final picture of my paradise, my loving family.
Monday, October 1, 2007
*Said like a confession in an AA meeting.* I am Amy and I am a Chicago Cubs fan. *Smile*
I have been a Chicago Cubs fan for as long as I can remember. My Grandpa was the culprit. We used to sit on the front porch and listen to the game on his little handheld radio. Then in later years, it progressed to watching it on WGN. I fell in love with the game and there was actually a time when I could name every player, state their statistics, and tell you what was likely to happen when they got to bat. Those were the days. Ryne "Ryno" Sandberg at second, Andre "Hawk" Dawson in right, Mark Grace at first, Shawn Dunstan at Short, Doug Dascenzo in Center, Damon Berryhill or Joe Girardi behind the plate. They were the greatest in my eyes and should have never lost a game...
Then I grew up and realized that I had been cursed to fall in love with the "Lovable Losers". The Cubs weren't meant to win games, they were destined to lose them. And so they have, over, and over again. A curse they say... or many depending on who you talk to. Well, I'm not saying I don't believe in curses, but I am saying that I don't think any curse is going to keep this team from moving on. There is a hunger in the eyes of this team that previous teams just haven't had. This will be the year. This is the year of the Cubs.
So how can I say this with a straight face? Let's put it this way. I don't want to see 100 years. 99 is more than enough for me. So let's do this thing. It's been ten years since Harry Caray left us. Let's win it for him. The World Series championship trophy has been at the Illinois State Fair two years in a row (White Sox in 2005 and Cardinals in 2006)... I'd like to make that three. Is it wishful thinking of this Cubs fan in a year that has been less than positive? Could be, but a girl can dream can't she?