Well, it's to the point now that I officially feel comfortable counting down by days instead of weeks. LOL 13 days to go. I guess it's just my lucky number that is making me feel this way. :D
Anyway, this week we are busy packing for our busy next few weeks. We will be spending four days in Ohio at Cedar Point riding roller coasters until my face turns blue and then IOWA later in the week where I will have no interruptions to finish some paperwork. Then the next week it's up to Chicago for surgery. I'm just ready for it. I want it to be over not because of the surgery but because I'm tired of dealing with other things. (I'd rather not get into it right now.) I'm very ready for the surgery and that doesn't bother me a lick. I know it's the right thing I just sometimes wonder why God has given me other things to annoy me while I prepare. I thought he wanted me to be strong and set for this but apparently he is trying to teach me a lesson that I just haven't yet figured out. Maybe that lesson will reveal itself before surgery and maybe it won't. Either way, I know what I must do and that is learn some tolerance. Tolerance to accept that not everyone thinks or feels the same way and we have to accept that difference even if it is showing itself in a situation you should have a say in.
Ok, enough of this. 13 days and counting. WOOHOO!!!
Wednesday, May 28, 2008
Well, it's to the point now that I officially feel comfortable counting down by days instead of weeks. LOL 13 days to go. I guess it's just my lucky number that is making me feel this way. :D
Sunday, May 25, 2008
I just wanted to follow up with the last post. I know that you will all be in very good hands with Kat... errr Kate. I know some of you have seen me refer to Kat before and she is the best. :) We've known each other for quite a while now and she has been one of my big supporters as I have gone on this path. I think we are both on the crazy side and feed off of each other very nicely. As you saw with the fruit basket reference, we have both found a way to keep things light even when talking about a major subject. That's just the way we are and when you are dealing with something like a brain tumor, attitude is everything.
Anyway, Kat is a bit nervous about writing to all of you but I know she has nothing to fear. You guys will probably never even notice I'm not the one writing it. I hope you all show her plenty of support in the writings. The more you give her and I love, the more frequently you will probably get updates... although she can only update when John calls her... LOL Although if you sweet talk her enough you might get some more crazy stories about me. :)
Well, I just wanted to follow-up and let you all know that I am here and getting ready for the big day. Love ya all. *Huggles*
I wanted to introduce myself as Amy's co-blogger. My name is Kate and I'll be updating Amy's blog when she's in the hospital and immediately there after.
I've been putting off this introduction for months! I never really knew what to say about myself, and thought I wouldn't have to step in for quite awhile. Wrong! Amy's surgery looms, and I better get on with introductions.
I live in Minnesota, Land of Perpetual Snow. Married, no children. Total city girl. I love knitting - projects that fill many a free hour, or the search for more yarn (you can never have enough yarn!). A job in a cooking store lets me talk and pursue my other love, food! I love to cook, eat and talk about food. I think scoping out the local farmer's market, or trying to make the perfect souffle, fun! Give me a French recipe for Crème brûlée, and I'll happily spend hours perfecting the recipe. A chihuahua named Stanley rounds out my life - he who thinks he's the biggest, baddest dog in the neighborhood!
Amy and I met many moons ago online. We share the same sense of absurd humor, sensibilities, and love of life - spending many a happy hour discussing gardens, husbands, and her disgusting choices of alcoholic drink.
We've giggled about the silly and not so silly, finding that humor helps in any situation.
When Amy first told me about the tumor last year, I was shocked. I had a hard time accepting that someone so dear, so vital, so intelligent! could have this nasty diagnosis. And me being me, I needed all the details - how big was it, where was it, what now?
Amy patiently led me thru the mire of information, her decisions, the ups and downs of MRIs, blood work and all the other details of "The Fruit Basket."
The Fruit Basket. Funny term eh? Its comes from one of the very first conversations we had about the tumor. I wanted to know how big it was, and she told me in very technical terms the millimeters and position. Here's the conversation from that time:
Kate: Well, I don't understand. Is that like the size of a grape?We've referred to it as The Fruit Basket ever since that day.
Amy: Well, maybe a little bigger.
Kate: A plum?
Amy: Maybe like a half an orange. Its hard to tell whats the tumor and whats the swelling.
Kate: Not a half an orange! Thats like... well, big! Maybe its a cherry. Or I prefer half a plum, thats smaller.
Amy: It could be a pineapple. Who knows until the tests come back.
Kate: Crap! You've got a freaking fruit basket up there!
I originally pressured Amy to start this blog as a way of getting information to friends and family, and as a way to connect with other people who have tumors. More importantly though as a way to express herself, and voice her fears and frustrations, to let off steam and stress. I pestered her for a week, maybe two, before she finally dipped a toe into the world of blogs.
I'm very happy she did.
She made me promise when she started the blog that I would take over for her if she were unable. She thought that I would be able to keep a level head, get information out to her friends and family via the blog in a timely manner following the surgery and hospital stay, and keep my sense of humor throughout it all.
Thats a very tall order. But I aim to try.
Saturday, May 24, 2008
I had a wonderful conversation with my NeuroSurgeon on Wednesday. I was able to take care of all the lingering questions that were still fighting in the back of my mind, get the details that I so longed for (yes I'm weird like that), and finally be able to step up knowing I've done what I can to be prepared.
So what did I learn? Well, I learned what will happen the day of surgery in detail. I won't share this information right now but I will after surgery is all over. He did a good job of walking me through from the pre-surgery MRI to what I have to do to be released (more appropriately who I have to get approval from) and finally to what recovery will probably be like. I learned about the pain medications I will be given, what things will occur in order to get the equipment I so dread off of me, and who I will be meeting as we move along. So it was a very good conversation and it was able to finally put that last shred of doubt from my mind.
Ok, I know you are asking yourself, "Surely this isn't the news that made her day. It would probably just terrify me more." And you would be right. So what is the news that made my day... Anyone that knows me can probably take a wild guess at what it is... Go ahead... do that now... Anyone??? I'll give you a hint... I'm doing this very thing the week before surgery?!?!? Ok, fine, he told me that I can ride roller coasters after I am feeling good again. :D That is such wonderful news because I really questioned whether he'd give me the go ahead. I figured it would be a bit risky but he pretty much said if I am feeling up to it and I'm crazy enough to get one... Go for it!!! That was such wonderful words to hear. I keep telling John that I'll start out tame... I'll go for the Ninja at Six Flags instead of anything else crazy like the Raptor at Cedar Point. LOL
Anyway, just wanted to share.
Oh, and did I mention that I just love my NS? He's fabulous and I am positive that I've made the right choice.
Friday, May 23, 2008
We are getting closer to the time and things are finally starting to line up now on this day 9 months since my tumor was discovered.
Medically - Things are finally falling into place. I will be going next Tuesday to have all the pre-surgical testing completed. This will include a chest x-ray, bloodwork, and an EKG. Not a big deal, I've had all of them performed before and some of them I've had numerous times. The good news about it is that my arm should be feeling good again before we leave on vacation. :D
I also have an appointment set with my GP for the following Wednesday. This will be my pre-surgical physical. Again, it shouldn't be anything out of the ordinary. It will give me a chance to talk with him as well and make sure we have all of the right connections in place.
I also had a nice and long conversation with my NeuroSurgeon on Wednesday. He answered some of the still remaining questions I had and by the end of the conversation I was even more confident that I had made the right choice. When you have a brilliant doctor, it is much easier to start a road you know will not be easy.
And last but not least, the date of surgery has been confirmed. I have to be there very early the morning of June 10th.
Emotionally - This week truly tested my emotional resolve. Things are falling into place and it's no longer an option to wonder if this is really going to happen or not. I WILL BE HAVING SURGERY... that slapped me across the face a few times this week. However, my emotions have remained intact and that is very important for me. I am not an emotional person. I'm the one that is always strong and focused when others are starting to lose their head. I am the one that can see the positive in a bad situation. This is who I am and it has served me well over the past 9 months. If I did not have this will and determination... this personality if you will, then I probably wouldn't be typing this out to you today because instead I'd be a nervous wreck sitting with my head between my knees in a corner somewhere. I am not the type of person that can do that. Because I have the control over my emotions that I do and because I have the outlook on life that I do, I'm standing tall and proud and ready to get this thing out of my head.
With all that being said, I did have to rely on my friends and John a few times this week to keep me steady and focused. Sometimes it's just a word or two, sometimes it's a full out conversation, and still others it's simply a hug but it keeps me focused and moving forward.
My subscription to a group who has become sisters to me, officially expired today. I will miss them all deeply. We have been through a lot together from infertility, to pregnancy, to losses, and more. They have been a huge support to me but it is time to finally close that chapter of my life. At this point in time, John and I's journey to have a second child is over and it is time to move on from that. However, to any of my friends from Fertility Friend that are reading this. I will miss you all and I hope you keep in touch. *Huggles*
Last Saturday also marked a step that was a huge change for me. As most of you probably saw, I cut off 12+ inches of hair. My hair is now the shortest its been in my memory. The last time I took a large amount of hair off it was actually about 2" longer than it is now so this has been pretty dramatic. However, it is a change that I am embracing. Everyone has been thrilled with my hair and thinks it looks wonderful. Once I get used to it, I'm sure I'll feel the same way. However, for now, I'm focusing on getting used to it so that I'm good and comfortable with it before surgery. It will be a 100 times easier to care for now in those post surgery days and I have a wonderful plan as well for what to do with it to make the time before I can wash it much easier. (You'll just have to wait and I'll post pics before I go in.)
Finally on the emotional side of things... A friend of mine whom I met when my baby brother began dating her, actually managed to bring me to tears a few days ago. Don't worry, they were happy tears. Anyway, they are no longer together but her and I remain friends and she sent me a message that one way she could support me in this venture is to not make me feel as crazy with my short hair, so she chopped hers off as well. She looks beautiful. Yes, I know, many don't feel that my hair is short at all and I guess technically it isn't, but it is very short to me. Anyway, it was just very sweet of her and now we could almost be twins. LOL (Actually I think hers is a bit shorter but that's cool... it looks good on her.) *Huggles*
Mentally - Despite times when I've struggled to focus this week, my energy cycle has regulated itself again and I am thankful for the burst I have received. I am quite satisfied now with the progress I have made. I still have a ton to do but I feel I have a manageable plan now.
This week I also touched base with a few neighbors. One of my neighbors was previously aware of what was going on. She is my walking partner but things have been so crazy that I haven't been going. I feel bad about not getting in touch with her but things have just been crazy. Anyway, she has agreed to feed my cats while we are gone so that's one less thing I have to worry about.
The other neighbor I got in touch with did not yet know about what was going on. We talked for several hours about what was going on and it felt good to connect with them the way I did. I really enjoyed our conversation and again regret that I hadn't gotten in touch with them before. The few times I tried didn't pan out for various reasons but in the end all is well.
Physically - I am hoping that the return of my natural energy cycle is not hindered by the fact I am now coming down with a cold. Yes, a cold. Not a good thing to have developing this close to surgery. However, as long as that is what it stays as, I should be fine. The drastic weather changes over the past several weeks and the stress that creeps up no matter what, has not made it easy to keep it away. My goal now is to just keep it from becoming bronchitis and a sinus infection. That would probably majorly delay things since I am usually out for weeks when these things take place.
Family - Things are going about as they did last week. My son is hanging in there and doing well. He's excited for school to just about be over.
John had a few rough patches this week but we are good about working with each other to pull ourselves up. I know it is harder on him than me. I have said it many times before that I am glad I am on this side of the picture and not in his place. I know that the hardest moment so far in his life will be that time I am in surgery. That's just how close we are. However, I know that seeing my face when he comes back to ICU will brighten him up and he will be greatly relieved. Our love is strong, we'll get through this. :)
Play - Dance was very nice Saturday and I enjoyed it. I will deeply miss dance over the next several months. Everyone there is so wonderful and I will miss them. I will check in with them when I'm feeling up to it.
Well, I think that wraps this week up. Lots of info in this one. *Huggles*
Tuesday, May 20, 2008
Well, we haven't made any huge progress yet but I have got my pre-surgery testing all planned now. I have a physical and further tests scheduled with my GP for Wednesday the 4th. Not sure what all they will require (I was preoccupied when the nurse called for the rundown) but I did catch bloodwork, physical, EKG, and chest x-ray. We'll see what else gets put on that list. She mentioned other things that I didn't recognize but she said they were bloodwork so we'll see what happens. It's definitely getting close and this appointment makes it very much reality. Should be an interesting appointment in between my two vacation dates. LOL
Anyway, just wanted to drop this information. I am hoping early next week we will have everything finalized as far as the date and time go. *huggles*
Well, we are now at the three week mark until surgery. Time is going by REALLY fast. Anyway, Saturday I took a big step towards making things easier for surgery. I cut off 12 or so inches of hair to donate to Locks of Love It's a huge change but everyone seems to like it. As I told John last night, "The jury seems to like it but the judge is still on the ledge." :)
I'll let you all be part of the jury as well. First you have the before pictures:
Now you have the after pictures:
As you can see, it is a huge change. For those of you that know me, you know just how big of a change it really is for me. The last time my hair was even close to this short I was in the 7th grade and it was still about 3 inches longer than it is now.
So what's the verdict? :)
Saturday, May 17, 2008
I'll be posting this late but I started it Friday. I just had enough going on that I didn't have time to finish typing it up until Saturday morning.
Medically - Other than fighting allergies, things have been on the quiet side medically this week. My allergy meds are only partially fighting it but it's no wonder with the weather changes we've been having. You can't expect anything to fight the impossible.
Emotionally - I was about the same as last week. I've had a few spells where I've just started rambling to whoever was around to listen but I think it's all to be expected. I've pretty much come to terms with the surgery and the like, it's more people that I'm struggling with now. There's just some things that no one understands about me and there's no way of making them understand so I just have to bite my tongue and deal with it on my own time. That sucks. It really does.
Mentally - I did make some progress this week but further was hindered thanks to my energy cycle being off and therefore I'm not sleeping too well. Typically I have two major spurts of energy in a day (early morning and late afternoon) then I am well ready for bed by 8 AM. However, recently my spurts have been early morning and late evening causing me to be anything but ready for bed until almost 10. I finally force myself to go to bed but then I wake up around 1 thinking the night is over and I'm ready to go again. This would be fine if I didn't have to get up at 5 AM to go to work all day and could take an afternoon nap or something. Many believe it might be subconscious anxiety that is causing this change. I don't honestly know because other than a few scattered times, I've been doing remarkably well with the anxiety. (Better with this than I was with things that didn't matter this time last year.) Anyway, I am continuing to move forward and if I can get my energy cycles sorted out I may be able to finish all the important stuff yet.
Physically - Basically I think the previous paragraph explains all of this.
Family -It has been overall a pretty decent week. We had a nice evening Friday night for my little brother's graduation from college. Yep, he passed me up. He got his bachelor's degree. That's cool with me. He deserves it. :)
I think everyone has been enjoying the week at our house. My son finally finished his room so he was officially ungrounded from video games and has been loving the fact he is back on them. However, I think things are starting to reach him a little bit. It seems like he frequently looks at me and says "Mommy, I love you." for no real reason. I think it's cute but I hate that he has to be worrying about me. It will be over soon enough.
John has been in a very similar position. I know he took off early one day this week because he just couldn't concentrate. Truth is, I left about an hour early one day as well. However, we are hanging in there, enjoying planning out our vacation to Ohio, and just enjoying life. :)
Play - We hope to go to my last dance before surgery tonight so that will be an interesting event. Beyond that we've not been doing a whole lot.
Well, I'm going to wrap this up because I have some work to do. *Huggles*
Wednesday, May 14, 2008
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*
Monday, May 12, 2008
Ok, I promised that I'd talk about our trip for June. It will be a blast and I can't wait.
We will be leaving on Saturday, May 31st to drive to Ohio. Sunday and Monday we will be visiting Cedar Point in Sandusky. Cedar Point has some of the greatest roller coasters in the world. My plan is to ride each and every roller coaster at least once. :) Have I ever mentioned that I love roller coasters? I'm seriously not sure if I have.
Anyway, then we'll drive back home on Tuesday. Wednesday John and I will go back to work for the day. It will be my day to say "see ya later" to all my friends at work. Then Thursday and Friday John has training in Iowa so my son and I are going with and will enjoy some quiet time. Not sure what all we will do yet but I'm sure we will come up with something creative.
I personally think it will be a fabulous week so I'm really looking forward to it.
We haven't gotten everything fully worked out yet but I also hope to join up with some online friends while we are in Ohio. We've met some of them before but one of them we've never met. We'll see if the plans pan out or not.
Anyway, there's the trip I mentioned and I can't wait. If you are curious to see why I am looking forward to it so much, here's their website, check it out: http://www.cedarpoint.com/
Sunday, May 11, 2008
Ok, so this is Sunday morning and I'm just not posting this. I apologize heavily for not putting reviews in for the last month. I've just been super busy and the weekly review was one of the things that fell off the world. :) So here it is... for the first time in May:
Medically - I had to see my chiropractor again last week after my neck didn't recover from our parent/child soccer game the week before. He was able to get me mostly back into line. My allergies have been going hard and heavy the last few days in particular. Even my allergy meds aren't keeping the semi stuffy nose and itchy watery eyes from developing. Tis the season. I'm just hoping at this point to let it run its course so that by the time we go on vacation the first week of June, it is all over with. I don't think there is anything else going on medically.
Emotionally - It was overall a rough week in the emotional front this week. The five week mark on Tuesday hit me like a ton of bricks and the one month mark yesterday caught me out of left field. As I was telling John last night, it's not really that it's one month away OMG... it's that I only have one month to finish doing what I need to. Beyond that I did have my moments where I asked myself what in the world I was doing. I guess sometimes I pop back to the, "You are not having problems so why are you doing this," thinking. I guess it's to be expected. However, I do think I am doing the right thing. My mind is set on it and I'm as ready as I'll ever be for it. This is something that really needs to be done so that a truly bad timing doesn't jump in instead.
Mentally - I think I've mentioned the "hard deadline" before and I seriously thought the one month mark would be a big motivational spot but that is backfiring on me. Yesterday I didn't get even a portion of what I needed done and it was this thinking, "I'll never get it all done so why bother". In one of my groups we call that "stinking thinking" and I am going to do my best to keep it away and still focus on the important things. I need to sit down and reevaluate the goals of what needs done and when. It seems there just isn't enough "good energy" hours in the day. Otherwise, things are really going like every day. Which is good because I miss the everyday.
Physically - I've been pretty tired most of the week and it's a combination of allergy meds and my natural physical down. I've tracked my swings for long enough that I know when my energy levels are going to suck (times of day, month, and year) and when my energy levels will raise. I have to just remind myself that you can't fight nature. Anyway, I look forward to my natural energy rise mid to late next week. I should be able to make some positive forward progress so hopefully this is just want we're waiting on.
Family - Well, we have had a good month. We've spent a lot of time together as a family and just plain having fun. The parent/child soccer game was a blast and I really enjoyed spending the time with son. He kept saying, "You better watch my mom, she's good." LOL I don't know where he got that idea since I had never played soccer other than PE but I think it's pretty cool all the same.
He is doing really well in school. The grades aren't as high as I'd like but he is trying and as long as he is doing his best, I'm not one to complain. I've reminded him that he has to meet certain requirements if he wishes to play any school sports and that is what he is working towards. I've also told him if he meets certain requirements this last quarter, than I will get him a month long sub to the game we all play. So he is working particularly hard towards that.
John is very busy right now. They are smack in the middle of planting season and this has been a particularly busy season this year. He's put in a lot of hours but he is doing a lot at home as well. He finished my computer desk units so I'm finally able to finish the computer room (minus the few pieces that aren't critical). He has also got our lawn mower ready to sell. If anyone in my area is looking for a riding mower, let me know.
Beyond that I think the one month mark hit him pretty hard as well. I've been reading a lot of things on "Carers" the last few weeks and I will just repeat that I'm glad I'm the patient not the carer. I know it's got to be hard for him but he is doing very well. I've told him he can always use my blog if he wants but he's not taken me up on that. He's not near the communicator that I am. I can sit here and "talk to myself" all day but he would rather not. Don't worry, when I'm out I have a friend who will be updating my blog until I can get back to it. You guys will be updated. :)
Play - Well, my son's soccer season is officially over. Their record ended up being not great but they did have two ties. He loved playing though because he learned a lot about being a goalie and he really enjoys that position. Yesterday, they had a soccer clinic that is run by the high school coach. He had a really good time and learned several things. He left the clinic telling me that he definitely wanted to continue playing soccer and that he may even play in the Pros some day. I'm just glad to see him finding something he truly enjoys. So, now I need to stay on the ball and make sure I get him in every opportunity I can for soccer between now and high school. His high school is on the large side so he will have to work very hard to make the team but I know if he sets him mind to it he will.
We haven't been dancing in a very long time. :( John has been late getting off of work and by the time he takes a chill it's just not worth going. Six days at work just wears him out so much that it's hard to consider anything else in there. We will go to next weeks dance and then I'll have only one more dance before I have surgery. Yikes. I shouldn't think of it that way.
Otherwise, not sure that we've been doing anything specific in the Play category. 4H is over for the summer and my son will have to work on his projects but otherwise it's just normal days.
We are working towards our plans for the first week of June. I think it will be a fabulous vacation even if it is a bit short. I'll post all about them later this week.
Well, I think that pretty much sums things up.
Friday, May 9, 2008
To wrap up this week on Brain Tumor Awareness I wish to give some statistics on what is going on in the world of brain tumors.
More than 200,000 people will be diagnosed with a brain tumor this year. Most of these tumors will be metastatic tumors that come from cancer in other areas of the body. However, 40,000 of these tumors will be primary brain tumors.
Brain tumors are the LEADING cause of death in children under the age of 20 and the third leading cause of death in young adults.
14 of every 100,000 people will be diagnosed with a primary brain tumor. (Not tumors coming from cancers elsewhere.)
Brain tumor research is severely underfunded and the survival rates remain significantly lower than those of other types of cancer.
Now I have a question for you and if you are so inclined, I wish you to post a comment with the answer. Other than what you have read in my blog or for those that know me in person what you have heard me say... how many times this week did you hear anything on Brain Tumor Awareness Week? Now tell me, how many times a week do you hear things on other cancers such as breast cancer?
Thursday, May 8, 2008
Brain tumors are classified according to the WHO (World Health Organization) system.
Tumors are classified by observations made concerning the appearance of the cells, its tendency to infiltrate into other areas and, its rate of growth. The classification of brain tumors is primarily an observance by a neuro-pathologist and can be classified differently by two different pathologists. Therefore, classification is not always easily determined. Furthermore, a single tumor can have cells of multiple classifications. In this case, the entire tumor is classified as the highest discovered grade found.
A grade one tumor has cells that are mostly normal in appearance. The cells are extremely slow growing and are even sometimes classified as a birthmark within the brain. The long term survival with a Grade One tumor is extremely good.
A grade two tumor has slightly more of an abnormal look but still appears mostly normal. This type of tumor has the potential to invade into other areas of the brain but are mostly of a slow growing type. A grade two has a much higher tendency of developing or recurring into a higher grade tumor.
A grade three tumor is actively growing and comprises of mostly abnormal cells. It has the tendency of invading surrounding tissue and has the strong possibility of returning as a higher grade tumor.
A grade four tumor is the most aggressive type of brain tumor. It is made of abnormal cells that reproduce at a very high rate of speed. This tumor rapidly invades surrounding brain tissue and actually produces its own bloodflow so it can maintain its rapid pace.
As you can see, there are very distinct differences between the benign and malignant tumors. One of the things that should be noted about the malignant tumors is that they are usually shown as enhanced in MRIs when given a contrast injection. This means they take in the gadolinium very quickly and therefore appear brighter in the MRI.
Wednesday, May 7, 2008
In continuation of the Brain Tumor Awareness discussion I would like to address the word benign in relation to brain tumors.
With tumors found in other areas of the body, the word benign is the best words that you can hear. With tumors in the brain, benign just means you have a different set of obstacles before you. Let's first explore, what is a tumor?
A tumor is an area where there is growth of normal or abnormal cells beyond that which is necessary. Typically a benign tumor is made of normal cells that reproduce very slowly. A malignant tumor is made of abnormal cells that can quickly reproduce.
A tumor in the brain can put pressure on very sensitive areas of the brain, causing a wide variety of symptoms. Because of this, a benign tumor in a sensitive area of the brain can cause just as much damage as a malignant tumor in a "safe" area of the brain. This is what causes benign tumors of the brain to be just as deadly as those which are malignant. It's a phenomenon that is unlike most other tumors found in the body.
A good thing about primary brain tumors (tumors that originate in the brain) is that they very rarely spread outside of the brain to other areas of the body. Occasionally a brain tumor will spread down the cerebral column into the spinal cord but it is extremely rare for it to extend beyond that.
This information is why even a benign tumor should be removed if it is in a location that is "safe". In most cases, no further treatment is needed beyond surgery for benign tumors, however, with a primary brain tumor's tendency to change grade and return, the patient should be watched for the rest of their life following the discovery of a brain tumor.
In honor of brain tumor awareness week I am going to make a few blog posts that are along the lines of awareness. So here goes the second in the series... Signs.
The signs of a brain tumor a wide and varied. Remember that no two tumors are alike and therefore no two people will experience the same symptoms... or in my case any symptoms at all. Here are some of the common symptoms that eventually lead to a brain tumor discovery:
- Change in headaches
- Headaches that become more frequent and severe
- Headaches that are worse in the morning
- Vision problems such as double vision, blurred vision, or loss of peripheral vision
- Loss of sensation or movement in the limbs on one side of the body
- Balance difficulties
- Nausea or vomiting with no apparent cause
- Speech problems such as slurred speech, using words out of context, or the inability to find the appropriate word
- Personality or behavior changes
- Hearing loss
- Memory loss
- Any of the above symptoms in connection with a headache
Tuesday, May 6, 2008
As much as I sometimes have my doubts that I'm on the right path, I know with subtle pushes from God that I am on the path he wants me to be. He is with me each and every day and he is giving me the gentle nudges I need when they are most needed. He has been determined to not give me the "painfully obvious" sign that I have looked for from day one but I have no doubt that he is giving me the signs I need when I need them to push forward. How do I know?
I have had thoughts of changing my mind a few times over the past few weeks. When things don't lay into place the way I want them to and my mind gets into a "what in the heck am I doing?" phase. Well, each time I get this way, God sends someone or something my way to gear me up again for the fight. It's like when a team has lost heart and out of no where the fans start cheering. It gears them up to go out there and fight again.
Last night, it was a call from a tumor buddy. I was really struggling and really ready to back out but my tumor buddy called me out of the blue. We talked. We discussed surgery. We discussed our thoughts on diagnosis. Through it all she reminded me that she is happy that I am doing this because she worries about what may be going on up there. I guess that is the kind of kick I need now and then. I have said from day one that I don't give a rip what is in my head. I really don't. Whether it is a grade one or a grade four I don't care. But I know that there are many people out there that are worried about what it is. They need to know so they know how to help me. Truthfully, I know that I need to get ahead of this thing and get it before it gets me but that doesn't make the decision any easier. That's why God has sent me angels each time I need that reminder.
Besides, His angels reminds me that he is holding me during all of this and that he will be right there beside me through it all. I will get through this with the help of God and all of my angels. Some signs don't hit you upside the head but are given to you gently and silently. *Huggles*
Five weeks from today is our planned surgery day. Am I nervous? Yeah, I'd have to say I am. Am I ready? Not really. I still have a lot I need to finish. Am I going to beat this thing? Hell Yeah!!!
It's been a somewhat rough emotional roller coaster the last week but I'm as ready to tackle this thing mentally as I'll ever be. I sometimes have my doubts but, who wouldn't?
Monday, May 5, 2008
This week is National Brain Tumor Awareness Week. I hope everyone thinks about and supports the cause this week. Spread the word. Brain tumors are out there and if you know someone who has one... let them know you are thinking about them this week.
- Each year approximately 40,000 people are diagnosed with at primary brain tumor. These are tumors that come from the brain rather than are travelers from cancers in other areas of the body.
- There are over 120 different types of malignant and benign brain tumors.
- There are no known causes of primary brain tumors.
- The cure rate for most types of brain tumors are significantly lower than that of other types of cancers because it is severely underfunded.
- Males have a 0.66% lifetime risk of being diagnosed with a primary malignant brain tumor and a 0.50% chance of dying from a brain tumor.(6)
- Females have a 0.54% lifetime risk of being diagnosed with a primary malignant brain tumor and a 0.41% chance of dying from a brain tumor.(6)
- The glioma family of tumor accounts for 44.4% of all brain tumors.
For more information visit any of the following sites:
American Brain Tumor Association
Brain Tumor Society
Grey is the symbol for brain tumors. To show ultimate support, make yourself a grey ribbon to wear this week. I will have mine. :)
Thursday, May 1, 2008
Well, I'm on day two past the parent/child soccer game and I still hurt in places I have long forgotten. I like to believe I stay active and I'm not in horrible shape by any stretch of the word but playing 1.5 hours of soccer kicked my behind.
I think I said in the last post that I intended to "throw" the game. Well, we get there and the coach indicates that he wants to make the kids try to learn teamwork. Therefore, he wanted us to actually play so that the only way they could win was to work together as a team and not do the "swarming" that they tend to do. Well, we were outnumbered at least 2 kids to each adult and we ended up winning 10-0. Ten goals when you are trying to show them proper teamwork is not a quiet affair. In the end, we had a great time and I think everyone enjoyed themselves.
After the fact... I haven't used most of the muscles that hurt in this way for at least 10 and probably more like 15 years. I loved pushing myself but man I am paying the price now. Anyway, wanted to give you an update on the game. *Huggles*