Saturday, September 29, 2007

I Am Still the Same

I am Amy and I was born on March 15, 1979. I am a proud graduate of a small town in central Illinois where I graduated with honors. I was married to my true love on October 5, 2006 and together we have a son who was born on February 13, 1997. I graduated with a 4.0 GPA from a local business college. I received my Associates Degree. I have been employed with a small company for 8 years and that small company is now owned by a large corporation. I work as a computer networking administrator. My husband and I bought a house in June of 2002 and since then we have worked to make that house a home.

I am good at Math, I suck at English, and I found History to be my favorite subject. I enjoyed the challenge of Physics, despised Biology, and found that there was more to love about Shop class than the teacher I had a crush on. I was an honor student in both high school and college, I was a 9 year 4H member, and I was my junior class president. I love softball, playing hockey, and watching the Cubs. I took three years of Spanish in high school, was a member of the National Honor Society, and received a 28 on my ACT. I can't sing to save my life but that wouldn't stop me from trying, I played the baritone in band, and I have come to love square dancing. I was a teen mom, I am a proud mom, and I am a loving wife.

I enjoy things that make me use my mind, I am very dedicated to making sure things run smoothly, and I often take the path less worn. I would give my life for those I love, I am very compassionate, and I take pride in the things I do. I enjoy a walk on a cool autumn day, kicking a ball with my son, or chatting online with friends. I use my gift of writing to take the burdens off of my mind, tell someone how I feel, or just because. I am a voice of reason, an ear of understanding, and a friend who cares.

I am short, I'm a bit overweight, and I have hair past my waist. I have a pseudocholinestrase deficiency, I no longer have my tonsils, and I had trouble with uncontrollable shaking in my hands until high school. I suffer from anxiety, seasonal allergies, and bronchitis attacks. I had braces, I have a bum knee thanks to many years of softball, and I've got lots of scars as old battle wounds. I have had problems with blood pressure in the past, once thought I had a serious ASD, and I have a brain tumor.

So why did I just dump out all of this random information about myself? It's to show that not only does all the things above make me who I am, but that each and every piece has been there and will continue to be there for a long time. All of the above stuff was true (including the I have a brain tumor section) before August 22, 2007 and possibly for most of my life. Just because now it is known, doesn't mean anything has changed. I will not do anything differently when it comes to living, I will not pull any punches just to keep from getting hurt, I am not fragile so I will not break, and I will not lay down and die. I am the same Amy I was prior to August 22nd and I will continue to be that same Amy. Wait, you are right, I'm not the same, because now I cherish each and every day given to me just a little bit more.

I will not use my diagnosis as an excuse, a leverage, or anything else so don't use it against me. "You have a brain tumor" is not a reason to think I am any worse off than you.

This was written in response to a few people who believe I am now "fragile" since my diagnosis became known. Every little headache is not from the tumor just as every klutzy moment is just that. Wait, you are a klutz as well, what's inside your head? I love you all, use caution in what you try to blame things on.

Friday, September 28, 2007

The Toughest Part of All

Before my son was born in February of 1996, I didn't want kids of my own. I wanted kids, but I planned on adopting. However, after getting pregnant with my son, I realized how much I loved being pregnant. No, I didn't have one of those perfect pregnancies. I had morning sickness through the first three months that caused me to live off of crackers and water, I had severe heartburn throughout, and I developed pregnancy induced hypertension. Despite this, I loved being pregnant and longed to have another baby to hold in my arms and watch grow up.

However, I am also a very sensible person that can not do anything without being thoroughly prepared. We had to have a home large enough for our children, the means to take care of them, and preferably the ability for one of us to stay at home with them.

This is why having a child until we had our own home was out of the question and thus we never even considered it. However, my clock was beginning to tick and we finally reached the point we could try to achieve another child. Being the sensible person I am, I sent both my husband and I to a doctor for a good old physical. The physical found a previously undetected heart murmur with me. This sent us to months of tests to rule out the originally suspected severe ASD. (Atrial Septum Disorder or a hole in the upper chambers of the heart) After we were finally given the "all clear", I was out of our ideal window for conceiving so we waited.

The window neared again and this time just months before, I came down with pneumonia that did not wish to go away. They finally put me on a medication that was able to get rid of it but not before telling me that I should not attempt to get pregnant for a year after being on it. There went another year. The next year, we were ready but alas it was again not meant to be as John came down with pneumonia and missed almost two months of work. Being the person I was, we survived but I no longer felt confident in our abilities to weather both that storm and have a baby, so we delayed yet again.

Finally in March of 2006, I had my birth control reversed and we began our journey of conception. One year later, we still had not succeeded. We began testing for infertility and thus far I had tested fine. We had some slight male factor issues but again it was determined it shouldn't be bad enough to keep us from conceiving. We continued to try but stayed with our agreement that in December of 2007 John would get a vasectomy and we would end our journey.

We were starting to prepare ourselves for the possibility that we would never have a second child, but we were still holding on to the next few months as hope that it would still happen. On August 22, 2007, when I found out that I had a brain tumor, not only did it put my future in question, but it squashed a dream that the three of us shared. It was no longer conceivable that we would have another child. My mind would not allow it to be an option, and, honestly, our hopes and dreams changed that day. I am still grieving for the child we will never have and it's sooner than I had hoped to face it.

All the unknown, the tests, and the possible procedures that are involved with a brain tumor, is nothing compared to knowing we'll never have a second child.

I was going to hold off on this entry a bit but decided now was the time. Now that my own dream of another child is over, I have begun taking pleasure in those around me who are finally able to meet that dream. Therefore, I wish to put out a congratulations to my cousin in the birth of her baby girl, a very good online friend in the birth of her baby girl, another online friend in the birth of her twin girls, and my mom and dad on the birth of their baby boy. (No I'm not getting a baby brother, they raise cattle and they had a baby born yesterday.)

Thursday, September 27, 2007

So What is This Thing

I've finally decided to address and download what I know about my tumor. I am going to precede this with "I am not a doctor and this is strictly a download of information that I have gathered in my head while doing a huge amount of research. I can not insure the validity of anything I say or even give sources for most of the information. I repeat, it is strictly a download of the information I have discovered by scouring the net and talking with people over the past 5 weeks. Remember that nothing I say here should replace the advice of your doctor or your own research."

First a bit about the brain. In the brain there are two types of cells, the Neurons which act as transporters and the Neuroglia or Glial cells which nourish.

When a tumor develops from the Glial cells in the brain, it is called a Glioma. This is the type of tumor I have. A Glioma is divided into four types or grades. Grade one and two are what they call low-grade Gliomas and grade three and four are what they call high-grade Gliomas. Low grade Gliomas are typically benign where high grade are malignant. A grade one glioma is a slow growing tumor with well defined borders while a grade two glioma is also slow growing but has varied borders and typically grows faster than a grade one. My neurosurgeon believes that I have a grade one glioma. (Note: the diagnosis can not be fully determined without a biopsy but that is addressed in another post.)

The good news about a Glioma is that they are resident in the brain meaning that they will not spread to other areas of the body. (They won't become metastatic and cause lung cancer for instance.) The bad news is that even a benign Glioma can grow very large and can turn malignant at some stage in its growth. Most problems with a Grade One Glioma are caused by the size of the tumor, not the tumor itself. Imagine your head in its confined little area with your brain nestled snugly inside of it. Now imagine an object, let's say the size of a plum (which seems to be a common size for when it is first diagnosed) that is sharing this space. Neither the brain nor the tumor wants to give up space and unfortunately, only the brain can be hurt by this battle. This "battle for space" can cause paralysis, headaches, seizures, or any number of other symptoms depending on the tumor's location. So why isn't it an obvious choice to just remove the thing then? Well, when partially removed or more importantly even when completely removed, a Glioma has a tendency to return and when it does, chances are good it will return malignant.

So what is the difference between a benign and a malignant tumor? Less than you might think. A benign tumor will still grow, it can still cause symptoms, and other issues. However, a benign tumor will not penetrate into the surrounding brain tissue. Rather it will simply "push" on it. A malignant tumor has little fingers that penetrate into the surrounding brain tissue, thus making it not only more difficult to eliminate but more "deadly".

The other issue is that with my tumor having been discovered with no symptoms, no one really knows how long it will be before I have symptoms and more importantly if it will ever grow big enough to give me problems. I was told by someone that it is believed that tens of thousands of people die each year with this type of tumor in their brain and they never had a symptom of it. So this thing could have remained in my brain for the length of my life (and it is estimated it's been there most of my life already) and never been discovered.

The typical treatment of a Glioma are as varied as the number of cases and neurosurgeons out there. Therefore, you could go to four different neurosurgeons and receive four different treatment plans. Some surgeons are on the "surgery is the only method" bandwagon and will operate regardless of whether it truly benefits the patient or not. Others believe that Radiation is the best method and that shrinking the tumor is as beneficial as removing it. Still others believe that you can use "watch and wait" and see if it will do anything before actually taking actions.

So the options for me become this... 1. I opt for a partial resection (removal) and remove the part of the tumor that is not in a critical area and take the chance of it causing a disability either physically or mentally. Then wait and hope it doesn't continue to grow or worse... turn malignant. Other options in conjunction with the surgery would be radiation or chemotherapy of which both have their own problems and issues and after all that it could still essentially kill me. 2. I can opt to choose radiation to attempt to shrink the tumor. This would only be an option after confirming the type of tumor and its risks include damaging the surrounding brain tissue from the radiation. 3. I can opt to watch it and employ one of the above methods if it shows signs of changing all the while hoping I die some day of old age. 4. I can do what I'm doing and that is to watch it but continue to constantly look at my options. This method is what found Gamma Knife for me and hopefully will continue to help me fight it without taking serious chances of permanently disabling me with the "cure" for my tumor.

Besides the risks mentioned above, it needs to be mentioned that my tumor is in the right frontal lobe of the brain but more importantly, it is also along an area called the motor strip. The frontal lobe controls things like emotion, planning ability, and thinking ability. Anyone that knows me knows that I have no problems in these areas except a bit of anxiety that could be hereditary rather than tumor caused. The motor strip, however, controls muscle movement for the opposite side of your body. Therefore, if I were to damage it with my tumor it would affect the left side of my body. This could be in any form from weakness in the face or arms to complete paralysis. This is why my tumor is considered virtually inoperable AND why some of the first signs of problems include issues with weakness or stumbling on my left side. (Go ahead, I can hear it now, is this why you are such a klutz? Don't worry peeps, I am just a klutz!!!)

Ok, so that was a brief explanation of the tumor, the treatment options, and what I'm doing. I will repeat that this is just a download of information. I do not know that all this information is indeed fact. However, it may give a perspective on what I am dealing with and why some of the decisions have been made as they have. If anyone has any information to add that maybe I didn't stumble across, please be sure to comment and let me know.

Wednesday, September 26, 2007

October Looks Like a Pumpkin

I use Microsoft Outlook to keep track of all the important dates, appointments, etc in my life. Well, one of the cool features about Outlook calendar is that you can give appointments a category and then set it to color-code those categories according to a rule. Well, in order to track doctor's appointments, I have it auto color them to a deep orange color. I was looking at my calendar this morning and realized that the month of October looks like a big pumpkin. Sure enough between specialists, doctors, chiropractor, dentist, therapists... there are about 20 appointments for the three of us in October.

To top it off, that's just doctor's type appointments!! I think it's going to be a busy month, what do you think?

Ok, short and sweet today because I don't really have anything to talk about. *Huggles*

Tuesday, September 25, 2007

Maybe my NeuroSurgeon Can't Count

That's a bit ominous if I should say so myself.

I just received a call from my NeuroSurgeon's nurse scheduling my first follow-up MRI. Maybe I should be happy that they seem to feel it's not serious enough to keep with his original plan. Then again maybe he just can't count. Regardless, instead of having the scan done next week (6 weeks since the last one) so that I have plenty of time to get the radiologist report before my appointment on the 19th with the NeuroSurgeon in Chicago, I will be having the second scan on the 18th. This would mean he must have changed his mind and is scheduling it for 8 weeks instead of 6. Or maybe he just can't count. Regardless, it's going to make things more difficult for me. At least all that is ABSOLUTELY NECESSARY I should have by then and that is the original scans. (I did say should as I still haven't seen a peep of my records and it's now been 26 days since I requested them.)

Anyway, so my MRI is scheduled for October 18th and it will have to be done with contrast. I have to have bloodwork done again some time between now and then to make sure my kidneys haven't begun to fail since my last MRI. Gadolinium, the dye they use for MRI contrast, has been known to cause kidney failure and therefore they won't use it if your kidneys are showing any problems. The contrast made me feel really nauseous last time so we'll see if I have the same problem from it this time. It is my understanding that it is not typical to have any reaction but I'll reserve judgment over whether it was nerves or the contrast for after the 18th.

At least going into it this time, I know that they do not have to give me an IV for it and can just give me a minor little injection. I have the feeling that isn't their typical way of doing it because of the time involved but they've already shown their hand.

I will post more about an MRI done with contrast some time before the MRI. As I said in a previous entry, I am a detail person and for those that like details, it will be a must read.

It's my Life my Decisions

Everybody handles traumatic news and life altering decisions in their own way. Some do whatever the doctor tells them to with no second guessing at all. Others question everything and ask all the tough questions. Some just give up and walk away from the whole experience. Still others don't believe they are doing the right thing if they are not doing something. I have dealt with each of these types since I've been diagnosed with my brain tumor.

So what is my way? I question everything and ask questions and I won't do anything unless I deem it worth my cause. This is why I am not going to be having a biopsy and why I am going to get an opinion on Gamma Knife even though my neurosurgeon feels differently. I'm not going to sit back and let him call the shots for my life or let a very promising procedure pass me by without at least a look. I'm not going to have a test run just to ensure the doctor has covered his behind.

If I had a dollar for every time it's been hinted or said to me that I am being selfish and that I'm playing Russian Roulette with my life, I'd be a millionaire right now. I guess the only response I have to that type of statement is as follows:

I am an intelligent young woman. I have the experience, knowledge, and means to make decisions for myself. I have never been one to make a decision without all the facts and without feeling good about it. Any decision I make has been weighed out against my life and discussed with the only person who's opinion I hold above all others and that is my husband. If together, we make a decision and we truly believe it is the best decision for us, then we are saying we are willing to take that chance. It's a risk that is worth it in our eyes, so please just support it.

I know that it is hard for many to understand that sometimes doing the accepted thing is not necessarily doing the best thing. The key to it all is that I don't want to just exist in life, I want to live life, if I can't live my life, then what is the reason in living? All of my decisions have to make me feel good about that statement. I don't want to live to be 100 and not have my mobility or mind about me. I would rather die at 40 of sound mind and body.

Just remember when talking with those that are facing similar life situations that it is ok to give your opinion but until you are standing in their shoes don't push "what you would do" on them. No one knows what decision they would make until it is staring them in the face. Instead of pushing things on them, support their decisions and let them know that even though you may disagree with them, you trust they are doing what they feel is best.

Monday, September 24, 2007

Don't Sweat the Small Things

My son and I were sitting at the table talking last night and he asked me what my favorite song is. As we talked about it I realized this question really isn't all that simple. I'm not afraid to say that my current all-time favorite song is "Just Another Day in Paradise" by Phil Vassar. Why? Because it reminds you not to sweat the small things in life. You see, little things in life happen and you just have to make the most of it and move on. Who cares if the milk went bad on you? (Don't think about the $3 a gallon price tag when answering this.) So you are late... big deal we can still make it special. It's the little things, both good and bad, that sometimes make the special memories.

Whenever I feel myself getting extremely stressed and just want to throw in the towel, I think of this song. It reminds me that nothing else matters because you are here, you are alive, and you have your family beside you. No one is perfect, things don't always go your way, and some day you really will look back and laugh. Take the time out each day to make something special of a "small thing". Laugh just because, give a hug, call a friend you haven't talked to for a while, or give a stranger a smile. Most of all remember that "it is just another day in paradise."

So now my challenge to you... What song seems to speak to you when you hear it? I'm anxious to hear what songs mean the most.

Again credit is given where it is due. "Just Another Day in Paradise" is a song written by Phil Vassar. You can hear it on his web page at:

Sunday, September 23, 2007

I Can Still Do It

Ok, so my son decided to start playing soccer this fall. He's never played it before and honestly the only experience I have with it is from PE in school. Therefore, he and I have been taking a crash course in soccer over the past few weeks. He's struggling with ball control and actually kicking the ball instead of the ground. So, I decided to help him.

So here we go outside last night to kick the soccer ball around. I'm sure anyone watching would have gotten a kick out of it as inexperienced me was trying to show him how to play. Actually, I enjoyed it. We did some of the drills that his coach uses and we were running back in forth in our yard dribbling and passing the ball. Then we tried a little bit of "keep away" and really we had a good time.

Until we did the collision that is. At one point I was trying to prevent him from getting the ball and he decided to block me. He did by putting us both to our knees as we collided knee to knee. Now I have a nice bruise the size of a golf ball starting on my knee. It should be fun to take the stairs at work with it by tomorrow. His young knees survived and he was back up running in no time at all.

Despite the nice little injury, we had a lot of fun and I enjoyed the fact I could actually keep up with a 10 year old. So with any luck I will be able to walk next week and in a few days I'll be out there kicking the ball around again. Until next time... Keep your eye on the goal!

Saturday, September 22, 2007

Start Planning: Getting Medical Records

I have a list of 60 or more things I need to get done in the category I call "Final Planning". Most of them are things that people should do anyway to help ease the burden on loved ones when their time comes. Yes, I realize most 28 year olds don't think about this type of thing but I'll be honest and tell you that it has been on my to-do list for about 10 years now. I've always been one to be prepared for anything.

Anyway, although not completely related to the "Final Planning" part, one of the tasks was to get copies of my medical records. I believe this is important for anyone but so much more important for those with a serious medical diagnosis. I know they will allow me to seek a second opinion without the hassle of having to have my records sent, to verify information is correct and therefore nothing missed, and to be able to make a list of accurate information in case of an emergency.

I started this process as quickly as I could after being diagnosed. I did some research first and figured out that I just had to call to obtain copies. Well, it wasn't quite that simple. I was able to get a hold of the records department and they faxed me some paperwork to fill out asking information about the doctor I wished records from, what types of records, etc. I faxed the information back that day. After not hearing from them for over a week, I contacted them again and found out that it could take up to 30 days to get my records. I'm glad I started this process early!

So now my records are in the process of getting to me. I also began a "Medical Journal" for me to keep track of all of my information. I won't get into that now but be on the lookout for an entry concerning it at a later time. It's been a very handy investment for me.

Friday, September 21, 2007

Mediating Between Insurance and Doctors

I've spent around 6 hours now over the last two days trying to sort out the mess that my insurance company and doctor's office has going on. Yesterday I received a bill for over $200 from my doctor's office. Now you have to understand that with my insurance and the fact I pay all of my co-pays the day of the visit, I should NEVER receive a bill from my doctor.

Anyway, so I go to my insurance website to look at all my EOBs and find out what is going on. Well, one of them was denied, usually coded wrong, will contact insurance to find out denial reason then inform the doctor. One it appears the insurance mishandled, will have to call them on that one. Oh and this one is just weird, it looks like insurance paid but not all of it, this one will be interesting. Oh dealing with them both... what fun.

So last night I call the insurance company. The one was denied because it was coded as administrative, needs to be recoded. Just as I expected. The second one did confuse him but it was obvious someone on their side had messed up, so he is sending it for review. That was really all I could deal with on the insurance side.

Now for the doctor. Well for the first one they have to check to see if it's ok for them to rebill it the proper way. Um, it was a physical, bill as such. The second one didn't really apply to them but I let them know it had gone in for review. The third... yes the third. Well apparently they still believe that there was only $93 paid of the $123 that should have. Despite my insurance company showing they paid it all. So after talking with them for over an hour over this, they finally agree to send it to their rep to find out what is going on. So this couldn't have been done sooner rather than keep me on the phone repeating the same thing?

Anyway, so now my bill is still in limbo and I just have to hope the two of them get their heads together. Some days I think it would be easier to set up a conference call between the two and let them discuss it out. Gotta love em!!!

Honestly, I Don't Bite... Hard

It appears that my hit counter is increasing and people are subscribing to my blog, yet there is only one comment on my page. I don't bite, honestly, it's ok to leave a comment even if it's just to say hi. I am curious as to who has visited and whether or not they think this blog is a good thing. I know it has helped me to get it all out in the open and now I can send friends to this for updates, but I will eventually run out of things to talk about. (Hey, none of that now, I can be quiet when I want to!!!)

I've actually finished the back story now and things are a bit quiet right now so I don't want to just talk to myself in my posts. I guess I'm just asking that if you are reading this, drop me a comment just so I know. :)

(I know at least one person that has had an issue trying to post a comment. If you have problems, email me at "amy79o at gmail dot com")

Thursday, September 20, 2007

The "Beginnings" Posts are Done

I have completed the writing of all the story that I wish to post date. Anything I write from this point forward will occur in the present even if they deal with things that occurred in the past because from now on it will be looked on in hindsight from my current feelings. I feel good about how the beginnings turned out and I think it will give a story line that can help others going through similar things and fill friends in on what has been happening. I look forward to now getting on with the present and things currently running through this chaotic mind of mine.

I am enjoying writing this more than I ever believed and I look forward to hearing from friends and readers as I continue on. *Huggles*

My Trigeminal Nerve is Healing

The injury that started the process of the now infamous MRI was to the fifth cranial nerve which is also known as the trigeminal nerve. It was the complete numbness on the right side of my face caused by the nerve that prompted me to begin the process that led to the discovery of my tumor. Now when I say complete numbness, I am very serious. If you were to cut my head in half, right down the middle of my nose, the entire right part would be numb. This includes my nose, mouth, eye, and tongue! (Believe me on the mouth and tongue part. It is no fun to eat half a bowl of chili thinking it is plenty cool only to "put the food in the other side" for one bite and realize it had been burning your mouth.)

Now, just to look at me, you would never know that I was having problems. Regardless of how funny it felt to me, from the outside I appear/appeared normal. This is perhaps the part that most perplexed my doctors because this typically appears with "pain" and shows minor signs of palsy or drooping. Leave it to me to be different yet again!

For six weeks I had this complete numbness with no signs of it letting off. Finally, about four weeks ago, I started getting my first signs of healing. (I have been heard joking that it just needed a little adrenaline rush to get started.) What were the signs? A tingling sensation usually around the edges of my nose, mouth, and eye. Although very annoying, I reminded myself that this was a good sign in the long run and it meant it was healing. Luckily that feeling was easy to maintain because it would only occur every few hours for a few minutes at a time so other than a few annoying "itches" it was no big deal.

A week ago that changed. I had noticed the "tingling" gradually changing and happening more frequently but it was never more apparent than when it nearly brought me to tears on the 13th of September. No longer was it an annoying tingling, now it was more of an intense burning. The only thing I can really compare it too is a case of REALLY bad chapped lips or windburn spread over the entire right side of your face. It was extremely intense and ibuprophen was just barely taking the edge off of it. (Ok, so four ibuprophen would almost take the edge off.)

So I called my neurologist (not to be confused with my neurosurgeon) and he called me in a prescription for Gabapentin to try to ease the pain. All I can say is that it is working great!!! Over the past week I have had spells where my face almost feels normal (or at least what I remember normal to be.) I do have occasional "break-through" burning but it is manageable. The numbing is mostly still present but now it's in various degrees of intensity.

Personally, I can handle all of this because I know it's a sign of healing. I just really look forward to the day this finally goes away because, although not related, it's a constant reminder that I'm dealing with something major inside my head.

Wednesday, September 19, 2007

It's Not Really a Knife

On October 19th, my husband and I are going to travel to Chicago (about three hour drive) to a doctor that performs Gamma Knife to determine if my tumor is eligible for this procedure. Don't let the name fool you, Gamma Knife isn't a knife at all. It is actually 201 beams of low dose radiation that, when they meet, can destroy cells in its path. The beams have low enough radiation that it does not affect any tissue it passes through until it meets at the site of the tumor causing very little damage to the normal brain tissue around it.

When I first "stumbled" across this procedure I was in a total state of shock. All I could say at first was "This is the answer to my prayers." Then, once reality started setting in, I felt that just maybe this was too good to be true. This procedure takes care of all my major fears. It gets rid of the tumor, it is non-surgical, and it doesn't require general anesthesia. Does sound a bit too good to be true, doesn't it?

Anyway, a bit about Gamma Knife. As I said above, Gamma Knife uses low beam radiation to penetrate and eventually destroy the tumor. The risks are minimal and there are very few serious complications of it. It does have its limits and not everyone is a candidate, thus why I'm on pins and needles hoping that it is an option for me.

I won't give any serious descriptions of it right now, but I do promise that if I do this procedure, I will give you detail for detail descriptions of what occurs. You will have all the information you ever wanted about Gamma Knife when I am through. For now, if you wish to research it, a good place to start is the sheffield link I have on the right. It has a lot of GREAT information on Gamma Knife including videos of someone from start to finish of having it done.

Until then, I will continue to hope that Gamma Knife is an option for me and that the one make or break question can be answered in a positive way... A glioma tends to always return and is reputed to return malignant, if I have this done now, will it still be a viable option in the future when/if it returns malignant? This is the one question that can fully determine whether this truly is the miracle solution I've been looking for.

Tuesday, September 18, 2007

Against the Odds and winning

I realize as reading through some of the entries I've started for my blog, that I have done a pretty good job of leaving several question marks about my life. I will attempt to head off some of those questions now.

First off, yes, I was a teen mom. I got pregnant at the age of 17. I married my true love in October before my son was born in February. Many believed we wouldn't make it and that I had "screwed up my life". However, I was destined to defeat the odds and not let that happen. We lived off of a very tight budget for two years as I finished high school and eventually college. I graduated from a local business college with an Associates Degree in Computer Networking in 1999. I later was able to get a job as a temp for a local manufacturing plant and was later hired on there permanently. I have been there ever since.

Shortly after my son turned five, my husband and I bought our home and 10 acres land in a small town just like we always dreamed. I won't lie and say that it was easy to get to the place I am now, but I'm living proof that it is possible. John and I will be celebrating our 11th wedding anniversary in 17 days. Since many people felt we wouldn't make it to five years, every year is special.

So what's the deal about being against surgery? This one is a little more complicated because part of my issue with it is based in reality and part in extended fears. When I was shy of three years old, I went in to have a routine tonsillectomy. What we didn't know is that I would come out of that being paralyzed for several hours. The cause was a genetic disorder called Pseudocholinesterase deficiency. It is a disorder that prevents your body from ridding itself of certain anesthesias in a timely manner, thus leaving you paralyzed until it is able to rid it. Now the disorder is scary enough but as long as it is known, it is typically relatively safe.

However, of course I can't be normal and have this the only affect, I tend to also have issues with things as minor as Lidocaine. If you've ever had dental work done, you've probably had this. It is not unusual for it to take up to 36 hours for me to start getting the feeling back in my mouth following dental work. Most look at me like I'm crazy and there can be no possible relation to it, but these facts make me fear that surgery is a much larger risk for me than the average person. Therefore, whenever you see me mention that "surgery is not an option", you have to realize that in my mind I am weighing out a lot of things. As hard as it's been for my hubby to hear me say it this way, "Is the benefit of doing this right now enough to justify me taking the chance of never getting off the table?" If I can't say that I'm ready and it's a risk that is worth taking, then chances are good it won't occur. Maybe my fears are unfounded, but I've always found I'm against the odds when it comes to statistics. Would you take that chance?

I think that's all the major things that need cleared up that I don't plan on addressing in the "Beginnings" section. I hope some day to actually have readers that will visit this and ask these questions. :)

I Think I Found Something

I was doing a bit of "exploring" within the blog and I found a neat little thing that actually lets me backdate my entries. Rather than scatter my "Beginnings" posts throughout my blog, I've decided to put them under the dates they belong. Then, when I have new readers (or any readers at all), they can go back to the beginning an read up on what is going on in order instead of having to search my whole blog for it. I hope this isn't too confusing. I will post a message whenever there is a new "Beginnings" posted so that everyone knows to go back and check it out.


A Look at the Present

We now know that the tumor I've been diagnosed with is believed to be a "good one to have" (If there is such a thing). What I have is believed to be a Grade One Glioma which is benign and because it was found by "accident" it is still in the early stages of its formation. It's size is approximately 3 cm by 2 cm or about the size of a very large grape. Since it was found by accident, it is currently not causing me any symptoms, therefore my decision was to "let's watch this thing".

So currently that is what we are doing. I will have another MRI at about the six week mark to make sure it's being a good little tumor and not growing. We will then schedule yet another MRI six weeks following that. We'll see how it goes from there. We may have to continue on the six weeks for a while or I may get to go more like three months. Which would be ok with me although I really don't mind the MRIs much.

However, in the meantime, I have a "second opinion" scheduled to see a doctor in Chicago to look into a "cutting edge" technology called Gamma Knife. If I am eligible for this procedure and some of my more critical questions can be answered satisfactorily, this is a very possible temporary solution to my tumor. I'll explain more about Gamma Knife at a later time.

There's some tidbits to think about for now. I will return later with another "Beginning" post about "those five words that change your life".


Monday, September 17, 2007

The Woman Behind the Blog

I can't think of any better place to start than with an introduction so that you know who the sometimes crazy person called DreamCatcher is. I'll admit that I don't normally consider myself a blogger but a friend mentioned it and I must admit that I liked the idea. If for no other reason than to be able to just randomly discuss the things going on in my life.

So, about me... My real name is Amy and I am a 28 year old that lives in the central Illinois area in the USA. I have been happily married for almost 11 years now to a wonderful husband named John (or Deereslayer). Together we have a 10 year old son Jazer who is just growing up so fast I'm not even sure where to start with him.

Anyway, I enjoy several things including Harry Potter, a Harry Potter related site called Plano Hogwarts, the online game Puzzle Pirates, reading, gardening (even if I do have a brown thumb), playing sports out in the yard, writing, Chicago Cubs, and just about anything different I'll try once.

So, what possessed someone this boring to decide to create her own blog? Good question. Well in short the answer is that my life changed forever on August 22, 2007 with five little words: "You have a brain tumor". I obviously have a lot to fill you in on since that was almost four weeks ago but don't fear I won't do it all at once. Any time you see the word "Beginnings" in the Title, you'll know that it's a flashback.

What do I hope to accomplish? I hope that it will help me cope with the future, help others through similar battles, and remind everyone that life is short so don't forget to "Thank the lord, every day, for just another day in paradise". Oh, and the final thing is to see if I really can keep a blog going with every title staying with the site's theme... just five words. (The exception will be those in the "Beginnings" category. I will not be counting the word Beginnings in the title count but the remaining will be five.) I do hope I'm up to that fun little challenge that will keep me motivated.

Ok, I'm off for now. I'll fill you in on much more as we move along. *Huggles*

(Quote is from the song "Just Another Day in Paradise" by Phil Vassar. It's a song that truly speaks if you ever get the chance to hear it.)

Thursday, September 6, 2007

Beginnings - The Answer to my Prayers?

I'm a researcher. The first thing I do with something I'm not familiar with, is look it up on the internet. If that doesn't give me results, I talk to people or seek out other sources. Even as far as two weeks later, I was filling my brain with all the information I could find. At prompting of remembering hearing it several times and a flagged email from a friend that was in my inbox, I began researching a procedure called Gamma Knife.

Gamma Knife truly sounded like a procedure that was sent directly to me from God. It seemed to be an answer for so many of the questions I've had since the tumor was found and addressed so many of my fears. The one question I'd had since this whole thing was discovered was, Why did we find this now? What am I supposed to do with this knowledge?

Well, here's a quick explanation of what this procedure would entail and why this seemed to be sent directly to me. It's an outpatient procedure where you typically arrive that morning and are released that night. You can typically return to your normal routine the very next day. There's no use of any anesthetic beyond a local for when they place the device. There are no knives and thus no "surgery". The risks are extremely minimal and this leaves a little to no chance of causing problems. The downfall to this procedure, the limit on how big of a tumor it can handle is small, thus not everyone is a candidate. The limits I'm reading is 4 cm. My tumor is 3 cm by 2 cm which technically should make me eligible. Typically a glioma is much larger when it is discovered. Did I mention that there would be no anesthetic risks involved?

So you can see why this procedure seemed to be written just for me. It addressed why I found it early and addresses all my "fears" in a positive way. You can also see why it felt almost too good to be true. So I emailed a doctor in my area that performs it. He agreed I'm a likely candidate and we have a consultation set up with him for October 19th. Could this really be the answer to my prayers? I am really hoping so.