Wednesday, May 14, 2008

Four Spokes of the Wheel

I hope the title of this post makes sense once you read through this. I guess I've just been in one of those emotional states lately that it feels I have to justify every decision I make. I know that this is because of some "unfinished discussions" that have taken place and will probably never be brought up again but I just feel the need right now to prove that I am a mature adult capable of making my own decisions even if some feel I do not yet have the "life experience" to make this type of decision.

(Ugh, sorry that sounded way more irritable than I intended but I still think it's good.)

Since I was first diagnosed with a brain tumor, I have used every resource possible to determine what the "right" decisions are. I am not one nor will I ever be one to blindly accept answers given to me by doctors. I believe they don't call it practicing for nothing. A doctor is no different than you or I, he has just been trained in a specialty. (Just as you are probably trained in yours) I value the knowledge and training they bring to the table. Trust me, I wouldn't want just anyone working on my brain so I value their training wholeheartedly. However, I also know that there is no professional in any profession that knows everything there is to know about it. In most areas you are either the "Jack of all trades and the master of none" or you are highly specialized in one specific area. (For instance, I am the Jack of all when discussing computers but I am highly specialized in Microsoft Office.) All this means is that a doctor does not have all the answers nor are they necessarily intimate with all the options.

With that said, I have based my decisions and research on four areas or spokes if you will. Medical professionals, Internet research, Blogs, and Support groups (particularly online). Each area brings something important to the table. A well-informed decision could not be concluded without all four areas. Now let me explain a bit about each one.

Medical Professionals - These guys bring experience, education, knowledge, and the specifics to you. They are the ones that can tell you that your MRI appears to be a 4cm tumor with blah, blah, blah. They are the ones that can give you the technical details to the questions you have. Of course, they are also the ones that will provide the treatment you receive. However, other than the rare cases where a doctor is also a brain tumor survivor, they can not tell you with experience things such as: How painful will the surgery be? How hard was it to get a brush through your hair? Will there be personality changes? Yes, they can give you the "text book opinion" but unless that person has actually been in the shoes of the patient, they can't give you first hand knowledge. I wouldn't want someone who has never built a computer before to walk me through it. I'd want someone who has first hand experience at it. The other limitation with doctors is they only have experience with what they know. And that's the case in all professions.

Internet Research - The internet brings the knowledge gained from any place in the world. You can tap into medical information from China or review experimental medical procedures in the UK. You might "stumble" across something that you doctor has never heard of yet might be that "miracle cure" you are looking for. However, the Internet has its flaws in that you can't always believe everything your read. Sometimes things that are merely opinions come across as facts. However, you wouldn't even know it's possible without seeing it. You then take this information back to your doctor and you never know. (Remember I would have never been introduced to Gamma Knife if I had not used this avenue. Yes it ended up being not an option for now but it is still something to tuck away for the future.)

Blogs - The day to day roller coaster that is the world of brain tumors. Blogs give you that inside look on what is really going on in the world of a brain tumor survivor. Sometimes they are hard to read because it tears you apart to see what they are going through. Sometimes it makes you see which path makes more sense. Still other times it makes you realize that this thing can be defeated. A blog is a first-hand perspective on what the future holds. I can't go to blogs and ask questions. I can't get explanations of major medical issues. I can draw strength from them, understand things I may be going through, and understand what is normal.

Support Groups - I have two main groups of support. I have the "patients" and the "supporters". The patients are my online support group. They are the ones I can ask real questions to and get honest answers. These guys have gone through it. They aren't reading the answers in a book or giving an opinion. They KNOW how painful a procedure is or what the undocumented side affects are because THEY HAVE BEEN THERE. They have already been where I stand today. If a doctor tells me something but my support group says something else and it is related to what the patient deal with... I guarantee you that I will take the opinion of the support group. In my feeling they are the plain and simple no holds barred truth. They are not in it for anything but to give answers. If they say something that convinces you to not do a treatment, they are not out hundreds of thousands of dollars. If a doctor does, he's out money. So tell me, which one has reason to not tell you to gory details?

The supporters do not add brain tumor knowledge but rather they give their thoughts on the situation but regardless of what you decide they give you their full support. These are very important people. They don't push their ideas on you, they don't tell you what to do, they don't pretend to know what you are going through, and they don't get mad when you don't include them in an important decision. This makes these people extremely important because they realize that the only one that can make these decisions and the only feelings that matter are yours. They make a patient feel special because they don't have to justify their decisions and they are allowed to maintain their privacy and dignity because the person understands that the patient is what is important not them. As you can see, I wouldn't be writing this entire post if everyone around me fell into this last category.

These four spokes are put together by a wheel. The wheel is actually more than just one piece. It is me, my caregiver (John), and God. God makes sure I am able to find the information available to me, he assures me that I am on the right track, and he guides both John and I's heart.

Anyway, I hope now you can see how each of the four spokes makes the wheel go round. Each is important and without all of them, I would not be able to make the decisions I have. Knowledge is power and that knowledge is found in many different places. Sometimes you just have to be willing to look outside of the box.

I'm sorry this post ended up a little on the bitter side but I just felt some things needed said. I'm sure the people this is directed to will never read this but if they do I hope they are able to see where I am coming from. I am not making a "fly by the seat" decision. I have not taken the first opinion I hear and running with it. I am making a decision based on every fact I can lay my hands on and sometimes it is hard to accept that even someone as young as I am can make life altering decisions.

Ok, time to wrap this up. *Huggles*

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