I am Making a List

... 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

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.

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".

Huggles

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.